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[null,null,"This Excel workbook contains the Evidence Map on \nCaregiver PRO Instruments"]
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[null,null,"How this Evidence Map was generated"]
[null,null,"We searched heoro.com on the 10th January 2018 for studies that used PRO tools to assess caregiver burden and caregiver-specific quality of life."]
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[null,null,"The search identified a total of 169 relevant abstracts published since 1960, which were segmented with the following standard heoro.com fields:"]
[null,null,null,"Locations - the geographical setting of the study, or, where this is unknown, the authors' location."]
[null,null,null,"Disease - the type of disease of the patient being cared for."]
[null,null,null,"PRO tools - the PRO intruments that were cited in the title or abstract that assessed caregiver burden or quality of life."]
[null,null,null,"Study type - the type of study that was conducted, e.g. observational study, RCT, systematic review, PRO tool validation study"]
[null,null,null,"Subpopulation - the age group of the patients being cared for."]
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[null,null,"In addition the following publication date segmentations are used:"]
[null,null,null,"1960 to 1985, 1986 to 1990, 1991 to 1995, 1996 to 1999, 2000 to 2004, 2005 to 2009, 2010 to 2014, 2015 to 2018"]
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[null,null,"All data in this Evidence Map is taken from the heoro.com database"]
[]
[null,null,"Contact us:"]
[null,null,"Address: Crystallise Ltd. Unit 21, Thames Enterpise Centre, Thames Industrial Park, East Tilbury, Essex, UK RM18 8RH"]
[null,null,"Tel: +44 (0)1375 488020"]
[null,null,"Email: alison.martin@crystallise.com"]

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[{"$f":"COUNT(A2:A948)","v":169},"Full citation","DOI","Authors","Title","Abstract","Citation","Locations","Year","Diseases","Interventions","PROtools","Subpopulations","Study types","Study methodologies","LocationsTags","SubpopulationsTags","DiseaseTags","InterventionsTags","StudytypesTags","StudyMethodologyTags","PROtoolTags","DateBand","C1","C2","C3","C4","C5"]
[1,"Agou,S.,et al. (2008). \"Is the child oral health quality of life questionnaire sensitive to change in the context of orthodontic treatment? A brief communication.\" J Public Health Dent 68(4): 246-248.",null,"Agou,S.,et al.","Is the child oral health quality of life questionnaire sensitive to change in the context of orthodontic treatment? A brief communication","OBJECTIVE: This study aimed to assess the ability of the Child Oral Health Quality of Life Questionnaire (COHQoL) to detect change following provision of orthodontic treatment. METHODS: Children were recruited from an orthodontic clinic just prior to starting orthodontic treatment. They completed a copy of the Child Perception Questionnaire,while their parents completed a copy of the Parents Perception Questionnaire and the Family Impact Scale. Normative outcomes were assessed using the Dental Aesthetic Index (DAI) and the Peer Assessment Rating (PAR) index. Change scores and effect sizes were calculated for all scales. RESULTS: Complete data were collected for 45 children and 26 parents. The mean age was 12.6 years (standard deviation = 1.4). There were significant pre-/posttreatment changes in DAI and PAR scores and significant changes in scores on all three questionnaires (P < 0.05). Effect sizes for the latter were moderate. Global transition judgments also confirmed pre-/posttreatment improvements in oral health and wellbeing. CONCLUSION: The results provide preliminary evidence of the sensitivity to change of the COHQoL questionnaires when used with children receiving orthodontic treatment. However,the study needs to be repeated in different treatment settings and with a larger sample size in order to confirm the utility of the measure."," J Public Health Dent 68(4): 246-248.","Canada",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation"]
[2,"Aguglia,E.,et al. (2004). \"Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy.\" Am J Alzheimers Dis Other Demen 19(4): 248-252.",null,"Aguglia,E.,et al.","Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy","In Italy,the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average,three-quarters of the caregiver's day is devoted to the patient,a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI),to quantify the caregiving workload and the Brief Symptom Inventory (BSI),to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman,approximately 60 years old. The majority of caregivers are spouses,followed by children. In general,these caregivers work at home,are housewives or retired,and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are,the greater amount of care and supervision they require,leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease,patient care tasks take up nearly all of the caregiver's free time,leaving them only about two hours per week for themselves or their friends. In conclusion,the management of dementia patients places a particular burden on the caregiver and involves several economic and social costs. The burden becomes heavier as the disease progresses,since the increase of cognitive disorders and the resulting reduction of independence in daily life,together with the onset of behavioral symptoms,heighten the caregiver's distress,anxiety,and depression. Establishing a network of community services able to alleviate the burden on families is therefore a priority. Parallels can be drawn between the stresses documented for American caregivers and their Italian counterparts."," Am J Alzheimers Dis Other Demen 19(4): 248-252.","Italy",2004,"Dementia",null,"CBI","Children and Adolescents,Older Persons","Observational"]
[3,"Al-Janabi,H.,et al. (2008). \"What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.\" Soc Sci Med 67(1): 111-121.",null,"Al-Janabi,H.,et al.","What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up","Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care,particularly to older people. As a result,careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people,to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on,organisational assistance,social support,activities,control,and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care,rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure,it may offer a promising way of incorporating the impact on carers in economic evaluations."," Soc Sci Med 67(1): 111-121.","UK",2008,"Frailty",null,"CExS","Older Persons","Validation"]
[4,"Al-Janabi,H.,et al. (2011). \"Estimation of a preference-based carer experience scale.\" Med Decis Making 31(3): 458-468.",null,"Al-Janabi,H.,et al.","Estimation of a preference-based carer experience scale","BACKGROUND: There is growing interest in incorporating the effects of interventions on unpaid carers in economic evaluation. Current methods focus on using health measures (which neglect important aspects of care-related quality of life) or using carer-specific sum score measures (which are not preference based). OBJECTIVE: To estimate preference-based index values for a profile measure of the caring experience (the Carer Experience Scale). METHODS: Eighteen profiles from the Carer Experience Scale were included in a best-worst scaling experiment. In each profile,respondents were asked to pick the best and worst attribute level from the profiles. The choice task was completed in a postal questionnaire by 162 unpaid carers of older people from 5 geographical locations in the United Kingdom. Logistic regression was used to estimate utility weights for the attribute levels of the Carer Experience Scale. Alternative modeling assumptions were employed to determine the stability of the parameter estimates. These parameter estimates were rescaled so that the profile index values for the Carer Experience Scale lay on a 0-to-100 scale. RESULTS: The results indicate that low levels of \"activities\" and \"getting on\" result in larger decrements to utility than other attributes of the caring experience. In general,greater value is placed on differences between the bottom and middle levels of attributes than between the middle and top levels. Alternative modeling approaches had a negligible effect on the index values. CONCLUSION: The index values reported in this study offer a new preference-based approach to incorporating the effects on carers in economic evaluation,focusing on care (rather than health)-related quality of life."," Med Decis Making 31(3): 458-468.","UK",2011,"Unspecified",null,"CExS","Older Persons","Validation"]
[5,"Alvarez-Ude,F.,et al. (2004). \"Health-related quality of life of family caregivers of dialysis patients.\" J Nephrol 17(6): 841-850.",null,"Alvarez-Ude,F.,et al.","Health-related quality of life of family caregivers of dialysis patients","BACKGROUND: This study aimed to evaluate the health-related quality of life (HRQOL) and burden on family caregivers of chronic dialysis patients and to analyze which factors were associated with it. METHODS: A cross-sectional multicentric study was carried out with 221 patient/caregiver pairs. General population Short Form 36 (SF-36) norms were used to estimate gender and age standardized physical component summary (PCS) and mental component summary (MCS) scores. The Duke-UNC Functional Social Support Questionnaire (FSS),the Zarit Burden Interview (ZBI),and sociodemographic and clinical data were also collected. RESULTS: The PCS and MCS of caregivers were slightly worse than that of the Spanish population. Multiple regression analysis showed that: (1) lower PCS was associated with younger age and higher ZBI of the caregiver (R2=0.15); (2) lower MCS was associated with higher ZBI and lower FSS of the caregiver,and lower MCS of the patient (R2=0.29); (3) higher ZBI was associated with lower FSS,PCS and MCS of the caregiver,and to older age and lower PCS and MCS of the patient (R2=0.49). Of caregivers 28.3% had a MCS < or = 42; logistic regression analysis showed that a MCS < or = 42 was associated to higher ZBI and lower FSS scores (p<0.001). CONCLUSIONS: The HRQOL of dialysis patient family caregivers is slightly worse than that of the Spanish population of the same age and gender. Younger family members,who are the primary carers of older dialysis patients with poor HRQOL,experienced a higher burden,had a worse HRQOL and had a higher risk of clinical depression; this was worse if low social support was perceived."," J Nephrol 17(6): 841-850.","Spain",2004,"Renal",null,"Zarit,FSS","Unspecified","Observational"]
[6,"Amieva,H.,et al. (2016). \"Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial.\" Int Psychogeriatr 28(5): 707-717.",null,"Amieva,H.,et al.","Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial","BACKGROUND: Although non-drug interventions are widely used in patients with Alzheimer's disease,few large scale randomized trials involving a long-term intervention and several cognitive-oriented approaches have been carried out. ETNA3 trial compares the effect of cognitive training,reminiscence therapy,and an individualized cognitive rehabilitation program in Alzheimer's disease to usual care. METHODS: This is a multicenter (40 French clinical sites) randomized,parallel-group trial,with a two-year follow-up comparing groups receiving standardized programs of cognitive training (group sessions),reminiscence therapy (group sessions),individualized cognitive rehabilitation program (individual sessions),and usual care (reference group). Six hundred fifty-three outpatients with Alzheimer's disease were recruited. The primary efficacy outcome was the rate of survival without moderately severe to severe dementia at two years. Secondary outcomes were cognitive impairment,functional disability,behavioral disturbance,apathy,quality of life,depression,caregiver's burden,and resource utilization. RESULTS: No impact on the primary efficacy measure was evidenced. For the two group interventions (i.e. cognitive training and reminiscence),none of the secondary outcomes differed from usual care. The larger effect was seen with individualized cognitive rehabilitation in which significantly lower functional disability and a six-month delay in institutionalization at two years were evidenced. CONCLUSIONS: These findings challenge current management practices of Alzheimer's patients. While cognitive-oriented group therapies have gained popularity,this trial does not show improvement for the patients. The individualized cognitive rehabilitation intervention provided clinically significant results. Individual interventions should be considered to delay institutionalization in Alzheimer's disease."," Int Psychogeriatr 28(5): 707-717.","France",2016,"Dementia",null,"Unclear","Older Persons","Observational"]
[7,"Appleton,S.,et al. (2003). \"Sustained improvements in dyspnea and pulmonary function 3 to 5 years after lung volume reduction surgery.\" Chest 123(6): 1838-1846.",null,"Appleton,S.,et al.","Sustained improvements in dyspnea and pulmonary function 3 to 5 years after lung volume reduction surgery","OBJECTIVES: To determine long-term survival rates of patients who underwent lung volume reduction surgery (LVRS) for emphysema and the factors associated with longer survival,and to evaluate levels of perceived dyspnea and health-related quality of life (HRQL) after a follow-up period of 3 to 5.5 years. DESIGN: Retrospective observational study. SETTING: Academic medical center METHODS: Telephone and postal surveys were used to obtain patient dyspnea scores and HRQL scores. Hospital databases and state registries were searched to determine patient survival and pulmonary function. RESULTS: Of 54 patients undergoing LVRS,29 patients (18 men and 11 women) were available for follow-up,which ranged from 36 to 66 months (mean +/- SE,51 +/- 1.5 months). There was significant sustained improvement in modified Medical Research Council scores compared to pre-LVRS: 2.19 +/- 0.19 vs 2.88 +/- 0.14 (p = 0.0000). Eleven of 22 patients demonstrated an increase in all three Mahler baseline dyspnea index grades of at least one level. Baseline body mass index (BMI) and post-LVRS length of stay (LOS) were significantly associated with survival: survivor vs deceased baseline BMI,24.2 +/- 0.6 vs 21.4 +/- 0.5 (p = 0.002),and post-LVRS LOS,15.4 +/- 1.7 days vs 28.7 +/- 5.3 days (p = 0.015). Compared to pre-LVRS,20 patients with mean follow-up time of 45 months demonstrated significant sustained improvements in FEV(1) percentage of predicted (31.4 +/- 2.1% vs 39.8 +/- 3.5%,p = 0.038),total lung capacity percentage of predicted (136 +/- 4% vs 122 +/- 3%,p = 0.0004),and residual volume percentage of predicted (237 +/- 14% vs 172 +/- 11%,p = 0.0001). Patient HRQL measured using the Dartmouth Primary Care Co-operative Quality of Life questionnaire was more favorable than that reported in aged-care settings. Caregiver burden scale scores indicate caring for a recipient of LVRS carries similar burden to that for caring for individuals with other chronic illnesses. CONCLUSIONS: In this population,a majority of the LVRS patients survived for >/= 3 years. Among survivors,dyspnea and lung function benefits were seen. Baseline BMI and postoperative LOS were significantly associated with survival."," Chest 123(6): 1838-1846.","Australia",2003,"Respiratory",null,"CBS","Adults","Observational"]
[8,"Askim,T.,et al. (2004). \"Evaluation of an extended stroke unit service with early supported discharge for patients living in a rural community. A randomized controlled trial.\" Clin Rehabil 18(3): 238-248.",null,"Askim,T.,et al.","Evaluation of an extended stroke unit service with early supported discharge for patients living in a rural community. A randomized controlled trial","OBJECTIVE: To evaluate the effect of an extended stroke unit service (extended service),with early supported discharge and co-ordination of further rehabilitation in co-operation with the primary health care system in three rural municipalities. DESIGN: A randomized controlled trial comparing extended service with ordinary stroke unit service (ordinary service). SUBJECTS: Sixty-two eligible patients with acute stroke living in the rural municipalities of Malvik,Melhus and Klaebu. MAIN MEASURES: The primary outcome was the proportion of patients who were independent according to Modified Rankin Scale (mRS) (independence = mRS < or = 2) 52 weeks after onset of stroke. Secondary outcomes were mRS at 6 and 26 weeks and Barthel Index (BI),Nottingham Health Profile (NHP) and Caregiver Strain Index (CSI) at 6,26 and 52 weeks. Mortality and length of stay were registered during the 52 weeks. RESULTS: Twelve patients (39%) in the extended service group versus 16 patients (52%) in the ordinary service group were independent according to mRS at 52 weeks (p = 0.444). The odds ratio for independence (extended service versus ordinary service) was 0.33 (95% confidence interval (CI) 0.088-1.234). According to outcome by secondary measures there were no significant differences except less social isolation on NHP in the extended service group at 26 weeks (p = 0.046). There were no significant differences in length of stay. CONCLUSION: An extended stroke unit service with early supported discharge seems to have no positive effect on functional outcome for patients living in rural communities,but might give a trend toward better quality of life. There were no significant differences in length of stay."," Clin Rehabil 18(3): 238-248.","Norway",2004,"Stroke",null,"CSI","Adults","RCT"]
[9,"Banaszkiewicz,K.,et al. (2012). \"Huntington's disease from the patient,caregiver and physician's perspectives: three sides of the same coin?\" J Neural Transm (Vienna) 119(11): 1361-1365.",null,"Banaszkiewicz,K.,et al.","Huntington's disease from the patient,caregiver and physician's perspectives: three sides of the same coin?","The aim of this study was to identify determinants of functional disability,patient's quality of life (QoL) and caregivers' burden in Huntington's disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor,behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability,health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score,SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances,cognitive impairment,apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient's QoL,while motor disturbances and depression were the predictors of the caregiver burden. Patient's disability and QoL as well as caregivers' burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different."," J Neural Transm (Vienna) 119(11): 1361-1365.","Poland",2012,"Neurology",null,"CBI","Adults","Observational"]
[10,"Bek,N.,et al. (2009). \"Turkish version of impact on family scale: a study of reliability and validity.\" Health Qual Life Outcomes 7: 4.",null,"Bek,N.,et al.","Turkish version of impact on family scale: a study of reliability and validity","BACKGROUND: Although there is a considerably high prevalence of developmental disorders in Turkey there are not many assessment tools related to evaluating the impact of these children on their family. The aim of this study was to determine the validity and reliability of the Turkish version of the Impact on Family Scale (IPFAM),a health related quality of life measurement to be utilized in clinical trials,health care services,research and evaluation. METHODS: Caregivers of 85 children with developmental disabilities answered the questionnaire and 65 of them answered it twice with a one week interval. The reliability of the measurement was assessed by Cronbach's alpha coefficient,and with intraclass correlation coefficient (ICC) for test-retest reliability. Construct validity was assessed by calculating the correlation between total impact score of IPFAM,WeeFIM and the physiotherapists' evaluation via Visual Analogue Scale (VAS) to determine the child's disability. RESULTS: Test-retest reliability was found to be ICC = 0.953 for total impact,0.843 for financial support,0.940 for general impact,0.871 for disruption of social relations and 0.787 for coping. Internal consistency was tested using Cronbach's alpha and was found to be 0.902 for total impact of IPFAM. For construct validity the correlation between total impact score of IPFAM and WeeFIM was r = -0,532 (p < 0.001) and the correlation between total impact score of IPFAM and the physiotherapist's evaluation was r = 0.519 (p < 0.001). CONCLUSION: The Turkish version of IPFAM was found to be a reliable and valid instrument for assessing the impact of developmental disorders of the child on the family."," Health Qual Life Outcomes 7: 4.","Turkey",2009,"Developmental",null,"IOFS","Children and Adolescents","Validation"]
[11,"Belasco,A. G. and R. Sesso (2002). \"Burden and quality of life of caregivers for hemodialysis patients.\" Am J Kidney Dis 39(4): 805-812.",null,"Belasco,A. G. and R. Sesso","Burden and quality of life of caregivers for hemodialysis patients","The aim of this study is to describe the characteristics of caregivers of chronic hemodialysis patients,assess their perceived burden and health-related quality of life,and investigate factors influencing this burden. We studied 100 hemodialysis patients and their respective primary caregivers for more than 4 months,measuring quality of life by the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Subjective burden on caregivers was assessed by the Caregiver Burden scale (score range,1 to 4; higher values indicate a greater effect). The majority of caregivers were women (84%),married (66%),with a mean age of 46 +/- 2 (SE) years,and of low socioeconomic level. Their main types of relationship with patients were wives (38%) and sons or daughters (27%). Caregiver Mental Health and Vitality were the most affected emotional dimensions on the SF-36 (mean scores,64.4 +/- 1.8 and 66.6 +/- 1.7,respectively). Mean score of total burden experienced was 2.07 +/- 0.05. Multiple regression analysis showed that independent and significant predictors of burden were Mental Health of the caregiver (R2 = 24%),Vitality of the patient (R2 = 10%),type of relationship of the caregiver (female spouse) (R2 = 5%),and Pain of the caregiver (R2 = 3%). Caregivers of hemodialysis patients may experience a significant burden and an adverse effect on their quality of life. Emotional aspects of caregivers (particularly female spouses) and patients are important predictors of burden. Social support and psychological interventions should be considered to improve caregiver life and patient outcomes."," Am J Kidney Dis 39(4): 805-812.","Brazil",2002,"Renal",null,"CBS","Unspecified","Observational"]
[12,"Belasco,A.,et al. (2006). \"Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.\" Am J Kidney Dis 48(6): 955-963.",null,"Belasco,A.,et al.","Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis","BACKGROUND: Despite the growing number of elderly patients with end-stage renal disease who need support,there are few studies about their caregivers. The objective of this study is to describe caregivers' characteristics and evaluate their burden and quality of life. METHODS: We studied caregivers of elderly patients (>or=65 years) on hemodialysis (HD) therapy (n = 84),on peritoneal dialysis (PD) therapy (n = 40),and a group of caregivers (n = 77) of nonelderly HD patients. Their quality of life was evaluated by using the Medical Outcomes Study 36-Item Short-Form Health Survey questionnaire,Caregiver Burden scale,and Cognitive Index of Depression. RESULTS: Most caregivers of the elderly were women (78%) aged 55 +/- 15 years and sons or daughters (41%) or wives or husbands (50%) of patients. Caregivers' Emotional Aspect,Vitality,and Mental Health were the most affected dimensions. The Mental Component Summary mean score,adjusted for patient race,educational level,primary diagnosis,hematocrit,comorbidities,and physical functional status,was worse for caregivers of PD than HD elderly patients (36.3 +/- 1.9 versus 44.8 +/- 1.5; P < 0.01). The most affected Caregiver Burden scale dimensions were General Strain and Environment. Thirty-two percent of caregivers showed signs of depression. CONCLUSION: Caregivers of elderly dialysis patients,especially of those on PD therapy,experience a significant burden and adverse effects on their quality of life. Educational,social,and psychological support interventions should be considered to improve the quality of life of caregivers."," Am J Kidney Dis 48(6): 955-963.","Brazil",2006,"Renal",null,"CBS","Older Persons","Observational"]
[13,"Bell,C. M.,et al. (2001). \"The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease.\" Alzheimer Dis Assoc Disord 15(3): 129-136.",null,"Bell,C. M.,et al.","The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease","The burden experienced by family caregivers of individuals with Alzheimer disease (AD) affects the caregivers' overall health-related quality of life (HRQOL). Assessing the influence on HRQOL is an integral part of determining the efficacy and economic attractiveness of interventions for AD. Generic preference-weighted instruments such as the Health Utilities Index Mark 2 (HUI2) are recommended for measuring HRQOL for cost-effectiveness studies. However,these instruments focus on physical attributes and have not been tested in an AD caregiver population. We administered the HUI2 to a population of 679 caregivers to people with AD at 13 community and institutional sites in the United States. We also administered the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36),a caregiver time questionnaire,and a caregiver burden instrument. The mean global HUI2 utility score for caregivers was 0.87 and varied little by the affected person's setting of care and AD stage (range,0.86-0.89; p > 0.2). The caregiver burden scales all varied by the affected person's setting of care,and some also varied by disease severity. The mental health component summary score of the SF-36 for caregivers varied across both disease stage and setting. Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. Generic preference-weighted instruments may not adequately capture differences in the burden of caregivers of those with AD. The development of condition-specific preference-weighted instruments may provide the means to better estimate HRQOL in AD caregivers."," Alzheimer Dis Assoc Disord 15(3): 129-136.","USA",2001,"Dementia",null,"Unclear","Older Persons","Observational"]
[14,"Bertule,D. and A. Vetra (2014). \"The family needs of parents of preschool children with cerebral palsy: the impact of child's gross motor and communications functions.\" Medicina (Kaunas) 50(6): 323-328.",null,"Bertule,D. and A. Vetra","The family needs of parents of preschool children with cerebral palsy: the impact of child's gross motor and communications functions","BACKGROUND AND OBJECTIVE: An understanding of the needs of families of preschool children with cerebral palsy (CP) is of essential importance if efficient and cost-effective services are to be provided to them. The aims of this study were to identify the most frequently expressed needs of families with preschool children with CP; differences in the amount and types of family needs based on the child's gross motor function and communication function level; and the impact of the child's gross motor function and communication function level on the type and amount of family needs. MATERIALS AND METHODS: A total of 227 parents of preschool children with CP completed a modified version of the Family Needs Survey and a demographic questionnaire. Children's gross motor function level and communication function level was classified using the Gross Motor Function Classification System (GMFCS) and the Communication Function Classification System (CFCS),respectively. RESULTS: The total number of family needs differed based on GMFCS and CFCS levels. Children's GMFCS and CFCS level were not significant predictors of overall family needs (adjusted R(2)=0.163). In this model the GMFCS level of children did not account for the total number of family needs,while the CFCS level did. CONCLUSIONS: Child's limitations in terms of communication and gross motor functions must be taken into consideration when planning services for families with preschool children with CP."," Medicina (Kaunas) 50(6): 323-328.","Latvia",2014,"Neurology",null,"FNQ","Children and Adolescents","Observational"]
[15,"Blank,S. J.,et al. (2014). \"Caregiver Quality of Life Is Related to Severity of Otitis Media in Children.\" Otolaryngol Head Neck Surg 151(2): 348-353.",null,"Blank,S. J.,et al.","Caregiver Quality of Life Is Related to Severity of Otitis Media in Children","OBJECTIVE: Otitis media (OM) in children is the most frequent reason for physician visits in developed countries and burdens caregivers,society,and the child. Our objective was to describe the impact of OM severity on parent/caregiver quality of life (QoL). STUDY DESIGN: Multi-institutional prospective cross-sectional study. SETTING: Otolaryngology,family,and pediatric practices. SUBJECTS AND METHODS: Children 6 to 24 months old with and without a primary diagnosis of recurrent OM and their caregivers. Physicians provided patient history,and parents/caregivers completed a Family Information Form,the PedsQL Family Impact survey,the Patient Reported Outcomes Measurement Information System (PROMIS) survey,and the OM 6-item severity survey (OM-6). RESULTS: A total of 2413 subjects were enrolled and data from 1208 patients and physician were analyzed. The average child age was 16 months,and 54% were male. The mean OM-6 score was 3.2. The mean PedsQL Family Impact score for parents was 66.9 from otolaryngology sites and 78.8 from pediatrics/family practice sites (P < .001). Higher (worse) OM-6 scores correlated significantly with worse PedsQL Family Impact scores (Pearson r = -0.512,P < .01). Similarly,increasing OM-6 scores strongly correlated with increased parental anxiety,depression,and fatigue,as well as decreased satisfaction (all P < .01). CONCLUSIONS: Worse PedsQL Family Impact and PROMIS scores were highly correlated with elevated OM-6 scores,suggesting that severity of childhood OM significantly affects parent/caregiver QoL. Understanding the impact of a child's illness on parent/caregiver QoL can help physicians counsel patients and families and provide better family-centered,compassionate care."," Otolaryngol Head Neck Surg 151(2): 348-353.","USA",2014,"Sensory",null,"PedsQL-FIM","Children and Adolescents","Observational"]
[16,"Boudas,R.,et al. (2013). \"Cross-cultural French adaptation and validation of the Impact On Family Scale (IOFS).\" Health Qual Life Outcomes 11: 67.",null,"Boudas,R.,et al.","Cross-cultural French adaptation and validation of the Impact On Family Scale (IOFS)","BACKGROUND: The IOFS (Impact On Family Scale) questionnaire is a useful instrument to assess the impact of chronic childhood conditions on general family quality of life. As this instrument was not validated in French,we proposed to translate,adapt and validate the IOFS questionnaire for clinical and research use in French-speaking populations. FINDINGS: The sample studied comprised French-speaking parents with a child presenting a cleft lip or cleft lip and palate,aged 6 to 12 years and treated in the University Hospital of Strasbourg,France. The 15-item version of the IOFS was translated into French and then sent to the parents by post. The structure of the measure was studied using Exploratory Factor Analysis (EFA),internal consistency was assessed using Cronbach's alpha coefficient and test-retest reliability was studied by calculating the Intraclass Correlation Coefficient (ICC). CONCLUSIONS: The French version of the IOFS questionnaire exhibited very good psychometric properties. For practitioners,this instrument will facilitate the assessment of the impact of chronic childhood conditions on quality of life among French-speaking families."," Health Qual Life Outcomes 11: 67.","France",2013,"Various",null,"IOFS","Children and adolescents","Validation"]
[17,"Brodaty,H.,et al. (2014). \"Prevalence and predictors of burden in caregivers of people with dementia.\" Am J Geriatr Psychiatry 22(8): 756-765.",null,"Brodaty,H.,et al.","Prevalence and predictors of burden in caregivers of people with dementia","OBJECTIVE: To examine prevalence and predictors of burden in caregivers of people with dementia attending memory clinics. METHODS: This Prospective cohort study conducted at nine memory clinics in Australia rated 732 outpatient attendees and their primary caregivers at baseline and at 3,6,12,24,and 36 months. Ratings were based on the following: dementia diagnosis according to the Diagnostic and Statistical Manual of Mental Disorders,Fourth Edition,Mini-Mental State Exam,Alzheimer's Disease Assessment Scale-Cognitive,Functional Autonomy Measurement System,Neuropsychiatric Inventory,use of psychotropic and antidepressant medications,patient and caregiver resource use,and the Zarit Caregiver Burden Interview (ZBI). RESULTS: Half the caregivers had significantly high levels of burden,rising to 57.7% at 12 months; with moderate to severe burden rates,rising from 14.7% at baseline to 22.8% at 12 months; and mean ZBI levels rising from 22.9 at baseline to 25.5 at 6 months and 27.7 at 12 months. Caregiver predictors of 6- and 12-month burden were their neuroticism and baseline ZBI score. Patient predictors were their level of behavioral symptoms,use of antipsychotics and antidepressants,and more rapid functional decline. Other predictors (female caregiver,level of cognition and function,diagnosis of frontotemporal dementia) were not significant in regression analyses. CONCLUSION: Caregivers of people with dementia have high and persistent rates of burden. Identification of caregivers likely to have high levels of burden at 12 months may allow more accurate targeting of interventions."," Am J Geriatr Psychiatry 22(8): 756-765.","Australia",2014,"Dementia",null,"Zarit","Older Persons","Observational"]
[18,"Brouwer,W. B.,et al. (2004). \"Burden of caregiving: evidence of objective burden,subjective burden,and quality of life impacts on informal caregivers of patients with rheumatoid arthritis.\" Arthritis Rheum 51(4): 570-577.",null,"Brouwer,W. B.,et al.","Burden of caregiving: evidence of objective burden,subjective burden,and quality of life impacts on informal caregivers of patients with rheumatoid arthritis","OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment),subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score),and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years,reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy,which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden."," Arthritis Rheum 51(4): 570-577.","Netherlands",2004,"Musculoskeletal",null,"SRB,CRA","Adults","Observational"]
[19,"Bruns,A.,et al. (2008). \"Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis patients.\" Joint Bone Spine 75(2): 149-154.",null,"Bruns,A.,et al.","Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis patients","OBJECTIVES: To evaluate the quality of life and the disease burden on primary caregivers of patients with juvenile idiopathic arthritis (JIA). METHODS: Seventy patients with JIA and their respective caregivers were enrolled in this study. Health,quality of life and psychological status were assessed by using the childhood health assessment questionnaire (CHAQ),the medical outcomes study 36-item short-form health survey (SF-36) and the psychiatric screening questionnaire (SRQ-20). Burden of disease on the caregivers was measured by the caregiver burden scale (CB Scale). RESULTS: Most caregivers were women (91.4%),married (76.6%),mothers (92.2%) and their average age was 37.2+/-8.8 years. Low education and socioeconomic state were observed in most of the caregivers. Psychoemotional disorders measured by the SRQ-20 were detected in 34.3% of the caregivers. Pain and mental health were the items in the SF-36 questionnaire most affected in these individuals. Mean score of global burden measured by the CB Scale was 1.6+/-0.3 (disappointment and environment had the lowest scores). The CB Scale was significantly correlated with the SRQ-20 (r=0.6),number of limited joints (r=0.3),number of visits (r=0.2),family income (r=-0.3) and mental health (r=-0.6),emotional aspects (r=-0.4),social aspects (r=-0.4),vitality (r=-0.5) and general health state of the SF-36 (r=-0.4). SRQ-20 was the most important determinant of CB Scale and of the components pain and mental health of the SF-36 questionnaire. CONCLUSIONS: Most of the disease burden on the caregivers depends upon emotional aspects rather than on the physical status of the patients."," Joint Bone Spine 75(2): 149-154.","Brazil",2008,"Musculoskeletal",null,"CBS","Children and Adolescents","Observational"]
[20,"Caqueo-Urizar,A.,et al. (2013). \"Typology of schizophrenic symptoms and quality of life in patients and their main caregivers in northern Chile.\" Int J Soc Psychiatry 59(1): 93-100.",null,"Caqueo-Urizar,A.,et al.","Typology of schizophrenic symptoms and quality of life in patients and their main caregivers in northern Chile","BACKGROUND: Schizophrenia is a serious mental disorder characterized by the presence of both 'positive' and 'negative' symptoms that affect the essential functions through which a person gains his or her sense of individuality and capacity for independent functioning. AIMS: To describe the typology of schizophrenic symptoms and their relationship to quality of life in patients with schizophrenia and their main caregivers. METHODS: Participants were 45 patients and 45 relatives seen by the mental health services in Arica,Chile. Patients were assessed using the Positive and Negative Syndrome Scale (PANSS),the Seville Quality of Life Questionnaire (SQLQ),and the Social Functioning Scale (SFS). The latter was also administered to caregivers,along with the Zarit Burden Interview. RESULTS: Patients reported moderate levels of quality of life,there being a strong relationship with the negative syndrome and the general psychopathology of the disorder. The quality of life of main caregivers was related with the general psychopathology of patients. The results regarding social functioning and the caregivers' perceptions of patients' functional capacity showed that patients had a very limited degree of social integration. CONCLUSIONS: Negative symptoms and general psychopathology are the main predictors of quality of life in both patients and their caregivers."," Int J Soc Psychiatry 59(1): 93-100.","Chile",2013,"Psychiatric",null,"Zarit,SFS","Unspecified","Observational"]
[21,"Cardenas-Valladolid,J.,et al. (2010). \"Prevalence of adherence to treatment in homebound elderly people in primary health care: a descriptive,cross-sectional,multicentre study.\" Drugs Aging 27(8): 641-651.",null,"Cardenas-Valladolid,J.,et al.","Prevalence of adherence to treatment in homebound elderly people in primary health care: a descriptive,cross-sectional,multicentre study","BACKGROUND: Adherence to the therapeutic plan is one of the most important health issues in terms of treatment efficacy,healthcare costs and patient safety. Unfortunately,homebound elderly patients are especially vulnerable to nonadherence because they have higher morbidity rates combined with cognitive and social problems that hinder their correct use of drugs. The level of therapeutic adherence in homebound elderly people has not been adequately studied. OBJECTIVE: To estimate the prevalence of therapeutic adherence,using the Morisky-Green test,in homebound elderly patients taking polypharmacy (defined as use of four or more drugs),and to study the factors associated with adherence. METHODS: This was a descriptive,cross-sectional,multicentre study. A total of 327 patients were selected by random start systematic sampling from the total number of homebound patients taking four or more drugs in Healthcare Area 4 of the Madrid Autonomous Region,Spain. Through an in-home survey of patients and their caregivers,information was gathered on sociodemographic data,co-morbidities,number of hospital admissions,responsibility for purchasing and preparation of the medication,level of cognitive impairment (Pfeiffer questionnaire),functional dependence in activities of daily living (Katz Index),knowledge of the disease (Batalla test),adherence to treatment (Morisky-Green test),visual and auditory perception,and caregiver burden (Zarit interview). RESULTS: Of the homebound patients,65.7% (95% CI 60.6,70.9) had good adherence to treatment. The variables most negatively associated with therapeutic adherence,after adjustment for age,sex,number of drugs,knowledge of the disease,and cognitive function,were a large caregiver burden (odds ratio [OR] 3.09; 95% CI 1.75,5.48) and impaired hearing (OR 2.00; 95% CI 1.17,3.40). There was also a trend toward a positive association between nonadherence and patients aged <85 years (OR 1.57; 95% CI 0.93,2.65) and patients who had nine or more drug prescriptions (OR 1.59; 95% CI 0.96,2.65). CONCLUSIONS: Poor therapeutic adherence in homebound elderly patients receiving polypharmacy is a serious problem affecting one of every three individuals concerned,and is directly related to caregiver burden,regardless of age,sex,cognitive status or number of drugs administered."," Drugs Aging 27(8): 641-651.","Spain",2010,"Frailty",null,"Zarit","Older Persons","Observational"]
[22,"Carod-Artal,F. J.,et al. (2013). \"Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients.\" Parkinsonism Relat Disord 19(11): 943-948.",null,"Carod-Artal,F. J.,et al.","Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients","PURPOSE: To analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients. METHODS: Caregivers answered Hospital Anxiety and Depression Scale (HADS),Zarit caregiver burden interview (ZCBI) and EQ-5D,a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor,Cognition,Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale. RESULTS: 50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years),p < 0.0001. Eighty-eight per cent of caregivers were females,and 78% were spouses. The proportion of caregivers who scored >/=11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8),and significantly worsened as severity of disease,based on H&Y,increased (H&Y 1-2: 16.4,H&Y 3-5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = -0.27 to -0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood,time of caregiving) were independent predictors of caregiver burden (adjusted R(2) = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL,as measured by the EQ-5D Index (adjusted R(2) = 0.28; p = 0.006). CONCLUSIONS: Patients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers."," Parkinsonism Relat Disord 19(11): 943-948.","Brazil",2013,"Parkinson's",null,"Zarit","Adults","Observational"]
[23,"Cate,I. M.,et al. (2002). \"Disability and quality of life in spina bifida and hydrocephalus.\" Dev Med Child Neurol 44(5): 317-322.",null,"Cate,I. M.,et al.","Disability and quality of life in spina bifida and hydrocephalus","This study examined the impact of severity and type of condition and family resources on quality of life in children with spina bifida and hydrocephalus. A national UK sample of children aged between 6 and 13 years with spina bifida (n=62),hydrocephalus (n=354),and spina bifida plus hydrocephalus (n=128) were identified via the register of the Association for Spina Bifida and Hydrocephalus (ASBAH). Parents completed standardized measures of Child Health Related Quality Of Life (CQOL),family needs survey (FNS),and caregiving self-efficacy scale (CSES) as well as questions on children's health and physical ability. Results showed there were no significant differences in the overall quality of life for the three disability conditions. The overall CQOL was over 1 SD lower for those with spina bifida and hydrocephalus than for children with other physical conditions. Sex and age were not related to overall CQOL. Specific aspects of CQOL differentiated the three groups. Children with spina bifida had poorer CQOL scores on self-care,continence,and mobility/activities whilst those with hydrocephalus had poorer scores on school activities,worries,sight,and communication. Severity of condition and family resources,i.e. CSES and FNS,predicted 32% of the variance in CQOL. Associations were also found between overall CQOL and problems discernible at birth as well as epilepsy. Other factors,including those related to shunts,were not significantly related to CQOL. It was concluded that hydrocephalus is just as great a threat to CQOL as spina bifida. Beyond the general effect of condition severity on CQOL,family resources (as measured by the CSES and FNS) represent an additional influence on CQOL."," Dev Med Child Neurol 44(5): 317-322.","UK",2002,"Neurology",null,"FNQ,CSES","Children and Adolescents","Observational"]
[24,"Chan,R. C.,et al. (2000). \"Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting.\" Spinal Cord 38(11): 687-696.",null,"Chan,R. C.,et al.","Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting","STUDY DESIGN: A cross-sectional retrospective study was carried out with structured questionnaires and semi-structured interviews on 66 persons with spinal cord injury (SCI) and 40 spouses. OBJECTIVES: The study aimed to explore the psychosocial adjustment of Hong Kong Chinese couples at the post SCI stage. An important study interest was the impact of care-giving in spouses of persons with SCI. SETTING: Three major regional rehabilitation centres and one community resource centre in Hong Kong. METHODS: A set of psychometric measures tapping different aspects of psychological functioning was included. These were locus of control (Levenson's Internality,Powerful Others,and Chance Scale),perceived social support (Provision of Social Relationship),coping strategies (Ways of Coping Checklist),marital adjustment (Dyadic Adjustment Scale),caregiving burden (Caregiver Burden Inventory),depression (Beck Depression Inventory),life satisfaction (Satisfaction with Life Situation),and social role adjustment (Katz Adjustment Scale - Relative Form). RESULTS: Persons with SCI with pre-injury marriage were more depressed (P<0.05) as compared with those with post-injury marriage. However,the two groups did not differ in terms of satisfaction with life situation and social role dissatisfaction. The spouses in the preinjury marriage reported a significantly higher score in time-dependent burden than those in the post-injury marriage (P<0.05). Care-giving burden was associated with locus of control,social support,and modes of coping (P<0.05). CONCLUSION: The impact of SCI is a long-lasting effect not limited to the patients but also extending to their spouses. Findings from the adjustment outcomes and coping styles of persons with SCI and their spouses indicate that they are not passive victims. A similar injury may produce different outcomes in different individuals. Rehabilitation professionals should thus be alert to both the couple's differing needs and idiosyncrasies in their helping process."," Spinal Cord 38(11): 687-696.","China",2000,"Neurology",null,"CBI,Katz","Adults","Observational"]
[25,"Chapko,M.,et al. (1993). \"Data collection in the Adult Day Health Care Evaluation Study.\" Med Care 31(9 Suppl): Ss15-25.",null,"Chapko,M.,et al.","Data collection in the Adult Day Health Care Evaluation Study","This report presents data collection measures and methods for the evaluation of Adult Day Health Care (ADHC) in the Department of Veterans Affairs (VA). Measures of patient health were survival,the Sickness Impact Profile,self-rated health,the Mini-Mental State Exam,Psychological Distress Scale,Social Support Scale,and Problem Behaviors Scale. Measures of health for the care giver were: Activities of Daily Living,Instrumental Activities of Daily Living,health perceptions,Psychological Distress Scale,life satisfaction,Social Support Scale,and Caregiver Burden Scale. We also assessed patient and care giver satisfaction with the care received by the patient. Measures of health status and outcomes were assessed primarily through patient and care giver interview at study enrollment,6 months,and 12 months. Utilization and cost both within and outside VA were assessed for hospital,ambulatory care,nursing home,ADHC,home care,pharmacy,laboratory,and other forms of health care. Sources of utilization data included VA's computerized patient database,VA medical records,patient questionnaires,care giver questionnaires,and health care providers outside VA. Costs were obtained from VA's cost accounting system,VA Central Office,VA's contracts with outside providers,and directly from outside providers. Utilization and cost were assessed for each patient for a period of 1 year after entry into the study."," Med Care 31(9 Suppl): Ss15-25.","USA",1993,"Frailty",null,"CBS,SSS","Older Persons","Protocol"]
[26,"Chew,J.,et al. (2015). \"Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach.\" Clin Interv Aging 10: 1687-1694.",null,"Chew,J.,et al.","Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach","BACKGROUND: Nonpharmacological interventions such as exercise and cognitive rehabilitation programs have shown promise in reducing the impact of dementia on the individual and the caregiver. In this study,we examine the effect of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers using conventional measures of cognition,behavior,quality of life (QoL),and caregiver burden together with goal attainment scaling (GAS),an individualized outcome measure. METHODS: Goals were set at baseline,and GAS score was calculated at the end of the program. Participants were also assessed with the Chinese Mini-Mental State Examination,functional and behavioral scales (Barthel Index),Instrumental Activities of Daily Living,Neuropsychiatric Inventory Questionnaire,QoL,and caregiver burden using EuroQol-five dimension questionnaire and Zarit Burden Interview (ZBI). Differences in median scores postintervention were obtained. Further analysis of caregiver burden was undertaken utilizing the multidimensional classification of burden on the ZBI. RESULTS: Thirty-four (61.8%) patients were assessed to have met their goals (GAS score>/=50). Mean (standard deviation) GAS score was 48.6 (6.5). Cognition goals were set in only 20.6%,followed by goals to improve engagement and socialization; reduce caregiver stress; and improve physical function,behavior,and mood. Median scores in the cognitive,functional,and QoL measures did not differ significantly pre- and postintervention. The intervention had a positive impact on role strain,a unique dimension of caregiver burden. CONCLUSION: This study provides evidence that a multimodal approach combining physical exercise and cognitive rehabilitation improves goal attainment and caregiver burden in individuals and caregivers of persons with mild dementia."," Clin Interv Aging 10: 1687-1694.","Singapore",2015,"Dementia",null,"Zarit","Older Persons","Observational"]
[27,"Chiatti,C.,et al. (2013). \"The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: study protocol for a randomized controlled trial.\" Trials 14: 155.",null,"Chiatti,C.,et al.","The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: study protocol for a randomized controlled trial","BACKGROUND: The epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers,on whom the main burden of care falls,putting them at higher risk of stress,anxiety,mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients,through case management,counseling,training,technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home. METHODS/DESIGN: A total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region,Italy,will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager,but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0),6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden,measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period,defined as the number of days free from institutionalizations,hospitalizations and stays in an observation unit of an emergency room. DISCUSSION: The UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care,that is,the use of case management,new technologies,nurse home visits and efforts toward the integration of existing services in an ambitious holistic design. The analysis of different interventions is expected to provide sound evidence of the effectiveness and cost of programs supporting AD patients in the community. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01700556."," Trials 14: 155.","Italy",2013,"Dementia",null,"CBI","Older Persons","Protocol"]
[28,"Chiatti,C.,et al. (2015). \"The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population.\" Aging Ment Health 19(6): 517-525.",null,"Chiatti,C.,et al.","The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population","OBJECTIVES: The paper describes recruitment results and characteristics of the UP-TECH clinical trial sample,including level of care services use,informal caregiver burden and its determinants. METHODS: UP-TECH is designed to test innovative care solutions for community-dwelling patients with moderate stage Alzheimer's disease and their caregivers in Italy. Four hundred and fifty patient-caregiver dyads were randomized into three arms receiving different combinations of services,composed of case management interventions,nurse visits,assistive technology and educational brochures. The research nurses administered a questionnaire comprising an in-depth socio-demographic assessment and several clinical scales,such as Novak's Caregiver Burden Inventory. Analyses of baseline data were conducted using uni- and bi-variate statistics. Linear regressions were computed to identify de-confounded correlates of caregiver burden. RESULTS: Four hundred and thirty-eight patient-caregiver dyads were recruited and randomized. In our sample,patients are predominantly women (71.5%),with an average age of 81.5 years and a mean Mini-Mental State Examination score of 16.2. Caregivers are mostly women (66.2%) and offspring (55.7%),with a mean caregiver burden score of 27.6. They provide more than 50 hours of care per week,while receiving an almost negligible support from public services. Factors associated with caregiver burden are female gender,kinship and the patient's behavioral disturbances. The most important factor associated with lower burden is the employment of a live-in care worker. CONCLUSION: The paper provides a comprehensive description of moderate stage Alzheimer's disease patients and their caregivers,suggesting useful markers of caregiver burden. The well-balanced randomization assures the reliability of the study data-set for prospective evaluation of care strategies."," Aging Ment Health 19(6): 517-525.","Italy",2015,"Dementia",null,"CBI","Older Persons","RCT"]
[29,"Chou,K. R.,et al. (1999). \"Burden experienced by caregivers of relatives with dementia in Taiwan.\" Nurs Res 48(4): 206-214.",null,"Chou,K. R.,et al.","Burden experienced by caregivers of relatives with dementia in Taiwan","BACKGROUND: The burden produced by caring for relatives with dementia is an increasing problem in the United States and Taiwan,necessitating a better understanding of the interrelationships of the factors that influence burden. OBJECTIVES: To test a theoretical model specifying how the demands of care,filial obligation,caregiving self-efficacy,coping strategies,and caregiving involvement affect caregiver burden. METHOD: A descriptive cross-sectional design with a convenience sample (n = 150) from outpatient clinics of three hospitals in Taiwan was used. The Caregiver Burden Inventory and the Cost of Care Index assessed caregiver burden. The antecedents of burden were assessed by the Physical Self-Maintenance Scale,Instrumental Activities of Daily Living,the Mini-Mental State Examination,the Revised Memory and Behavior Problem Checklist,the Montgomery obligation subscale,Cicirelli's obligation scale,the Caregiving Self-efficacy Scale,the Caregiving Involvement Scale,and the Ways of Coping Questionnaire. RESULTS: The original model did not fit the data well but minor respecifications produced a good model as evidenced by a chi2/df ratio of 2.1,a goodness-of-fit index of .89,and a comparative fit index of .93. Demands of care on the caregiver and filial obligation had direct positive effects on caregiving involvement. Caregiving involvement and emotion-focused coping had direct positive effects on caregiving burden. Filial obligation,caregiving self-efficacy,and problem-focused coping had direct negative effects on caregiving burden. Six of the seven original hypothesized structural relationships were confirmed in the final model. CONCLUSIONS: The Burden Model tested in this study corroborates findings from other burden studies and extends our knowledge of caregiver burden. Filial obligation,self-efficacy,demands of care,involvement in care,and coping were shown to predict burden in this sample of Taiwanese caregivers. Future study is needed to evaluate interventions designed for family caregivers of persons with dementia. Especially needed is research in the area of counseling and mental health services to assist caregivers in dealing with manifestations of burden."," Nurs Res 48(4): 206-214.","Taiwan",1999,"Dementia",null,"CBI,CCI","Older Persons","Observational"]
[30,"Chung,M. L.,et al. (2016). \"Depressive symptoms in patients with heart failure negatively affect family caregiver outcomes and quality of life.\" Eur J Cardiovasc Nurs 15(1): 30-38.",null,"Chung,M. L.,et al.","Depressive symptoms in patients with heart failure negatively affect family caregiver outcomes and quality of life","BACKGROUND: Depressive symptoms in people with heart failure (HF) are highly prevalent. Caring for patients with both HF and depression may be more burdensome than caring for patients with HF alone. AIMS: The purpose of this study was to examine differences in caregivers' outcomes (i.e. caregiving burden,difficulty and time spent on caregiving,perceptions of life change as a result of caregiving,and quality of life) between caregivers who take care of HF patients with depressive symptoms and without depressive symptoms. METHOD: Patient-caregiver dyads at an outpatient clinic completed survey questionnaires. Patients' depression was assessed using the Beck Depression Inventory-II (BDI-II); primary caregivers completed caregiving outcome questionnaires. Differences in caregiving outcomes between patients with and without depressive symptoms (BDI-II>/=14) were examined using t-tests,Chi-square,and Mann-Whitney U-test. RESULTS: Of 102 patients (64% male,mean age 61,41% NYHA Class III-IV,mean ejection fraction 35.8+/-13.9),26.5% had clinically significant depressive symptoms. Of the primary caregivers (78% female; mean age 56.7),42% reported severe burden (the Zarit Burden Interview (ZBI)>/=17). Caregivers of patients with depressive symptoms had a higher level of burden (25+/-13 vs 13.5+/-12 on the ZBI; p<0.001),spent more time caregiving (37+/-12 vs 30+/-11 on the Oberst Caregiving Burden Scale; p=0.004),and reported worse mental quality of life (46+/-10 vs 51+/-10 on the SF-12v2; p=0.026) than those of patients without depressive symptoms. CONCLUSION: Family members caring for HF patients with depressive symptoms had significantly higher levels of caregiving burden and worse quality of life compared to those caring for patients without depressive symptoms."," Eur J Cardiovasc Nurs 15(1): 30-38.","USA",2016,"Cardiac",null,"Zarit","Adults","Observational"]
[31,"Cousins,R.,et al. (2002). \"Assessing caregiving distress: a conceptual analysis and a brief scale.\" Br J Clin Psychol 41(Pt 4): 387-403.",null,"Cousins,R.,et al.","Assessing caregiving distress: a conceptual analysis and a brief scale","OBJECTIVES: Although it is well known that informal caregiving can have negative outcomes,and is an important factor in institutionalization,there is currently no common model to assess psychological distress in caregivers. In this study,we considered the conceptualization of caregiving distress,and present a five-dimension,17-item Caregiving Distress Scale (CDS). DESIGN: The CDS was developed by administering several scales from the caregiving literature to a sample of 80 Parkinson's disease caregivers longitudinally. METHOD: A total of 58 items from published questionnaires were reduced initially by a hierarchical cluster analysis,then by factor analysis. RESULTS: This procedure produced five distinctive subscales - relationship distress,emotional burden,care-receiver demands,social impact,and personal cost - that also had high internal reliability. CONCLUSION: The CDS is quick to administer and score,and has the potential to be used to profile an individual caregiving situation. Of critical importance for the application of findings from the caregiving literature,the scale can be used to target the type of intervention for the amelioration of caregiving distress."," Br J Clin Psychol 41(Pt 4): 387-403.","UK",2002,"Parkinson's",null,"CDS","Unspecified","Validation"]
[32,"Creemers,H.,et al. (2014). \"Cluster RCT of case management on patients' quality of life and caregiver strain in ALS.\" Neurology 82(1): 23-31.",null,"Creemers,H.,et al.","Cluster RCT of case management on patients' quality of life and caregiver strain in ALS","OBJECTIVES: To study the effect of case management on quality of life,caregiver strain,and perceived quality of care (QOC) in patients with amyotrophic lateral sclerosis (ALS) and their caregivers. METHODS: We conducted a multicenter cluster randomized controlled trial with the multidisciplinary ALS care team as the unit of randomization. During 12 months,patients with ALS and their caregivers received case management plus usual care or usual care alone. Outcome measures were the 40-item ALS Assessment Questionnaire (ALSAQ-40),Emotional Functioning domain (EF); the Caregiver Strain Index (CSI); and the QOC score. These measures were assessed at baseline and at 4,8,and 12 months. RESULTS: Case management resulted in no changes in ALSAQ-40 EF,CSI,or QOC from baseline to 12 months. ALSAQ-40 EF scores in both groups were similar at baseline and did not change over time (p = 0.331). CSI scores in both groups increased significantly (p < 0.0001). Patients with ALS from both groups rated their perceived QOC at baseline with a median score of 8,which did not change significantly during follow-up. CONCLUSION: Within the context of multidisciplinary ALS care teams,case management appears to confer no benefit for patients with ALS or their caregivers. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that case management in addition to multidisciplinary ALS care does not significantly improve health-related quality of life of patients with ALS."," Neurology 82(1): 23-31.","Netherlands",2014,"ALS",null,"CSI","Unspecified","RCT"]
[33,"Daley,D. J.,et al. (2014). \"Adherence therapy improves medication adherence and quality of life in people with Parkinson's disease: a randomised controlled trial.\" Int J Clin Pract 68(8): 963-971.",null,"Daley,D. J.,et al.","Adherence therapy improves medication adherence and quality of life in people with Parkinson's disease: a randomised controlled trial","BACKGROUND: Many factors are associated with medication non-adherence in Parkinson's disease (PD),including complex treatment regimens,mood disorders and impaired cognition. However,interventions to improve adherence which acknowledge such factors are lacking. A phase II randomised controlled trial was conducted investigating whether Adherence Therapy (AT) improves medication adherence and quality of life (QoL) compared with routine care (RC) in PD. METHODS: Eligible PD patients and their spouse/carers were randomised to intervention (RC plus AT) or control (RC alone). Primary outcomes were change in adherence (Morisky Medication Adherence Scale) and QoL (Parkinson's Disease Questionnaire-39) from baseline to week-12 follow up. Secondary outcomes were MDS-UPDRS (part I,II,IV),Beliefs about Medication Questionnaire (BMQ),EuroQol (EQ-5D) and the Caregiving Distress Scale. Blinded data were analysed using logistic and linear regression models based on the intention-to-treat principle. RESULTS: Seventy-six patients and 46 spouse/carers completed the study (intervention: n = 38 patients,n = 24 spouse/carers). At week-12 AT significantly improved adherence compared with RC (OR 8.2; 95% CI: 2.8,24.3). Numbers needed to treat (NNT) were 2.2 (CI: 1.6,3.9). Compared with RC,AT significantly improved PDQ-39 (-9.0 CI: -12.2,-5.8),BMQ general harm (-1.0 CI: -1.9,-0.2) and MDS-UPDRS part II (-4.8 CI: -8.1,-1.4). No significant interaction was observed between the presence of a spouse/carer and the effect of AT. CONCLUSION: Adherence Therapy improved self-reported adherence and QoL in a PD sample. The small NNT suggests AT may be cost-effective. A larger pragmatic trial to test the efficacy and cost-effectiveness of AT by multiple therapists is required."," Int J Clin Pract 68(8): 963-971.","UK",2014,"Parkinson's",null,"CDS","Adults","RCT"]
[34,"Dambi,J. M. and J. Jelsma (2014). \"The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study.\" BMC Pediatr 14: 301.",null,"Dambi,J. M. and J. Jelsma","The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study","BACKGROUND: Cerebral palsy requires appropriate on-going rehabilitation intervention which should effectively meet the needs of both children and parents/care-givers. The provision of effective support is a challenge,particularly in resource constrained settings. A quasi-experimental pragmatic research design was used to compare the impact of two models of rehabilitation service delivery currently offered in Harare,Zimbabwe,an outreach-based programme and the other institution-based. METHOD: Questionnaires were distributed to 46 caregivers of children with cerebral palsy at baseline and after three months. Twenty children received rehabilitation services in a community setting and 26 received services as outpatients at a central hospital. The Gross Motor Function Measurement was used to assess functional change. The burden of care was measured using the Caregiver Strain Index,satisfaction with physiotherapy was assessed using the modified Medrisk satisfaction with physiotherapy services questionnaire and compliance was measured as the proportion met of the scheduled appointments. RESULTS: Children receiving outreach-based treatment were significantly older than children in the institution-based group. Regression analysis revealed that,once age and level of severity were controlled for,children in the outreach-based treatment group improved their motor function 6% more than children receiving institution-based services. There were no differences detected between the groups with regard to caregiver well-being and 51% of the caregivers reported signs consistent with clinical distress/depression. Most caregivers (83%) expressed that they were overwhelmed by the caregiving role and this increased with the chronicity of care. The financial burden of caregiver was predictive of caregiver strain. Caregivers in the outreach-based group reported greater satisfaction with services and were more compliant (p < .001) as compared to recipients of institution-based services. CONCLUSION: Long term caregiving leads to strain in caregivers and there is a need to design interventions to alleviate the burden. The study was a pragmatic,quasi-experimental study thus causality cannot be inferred. However findings from this study suggest that the provision of care within a community setting as part of a well-structured outreach programme may be preferable method of service delivery within a resource-constrained context. It was associated with a greater improvement in functioning,greater satisfaction with services and better compliance."," BMC Pediatr 14: 301.","Zimbabwe",2014,"Neurology",null,"CSI","Children and Adolescents","Observational"]
[35,"das Chagas Medeiros, M. M., et al. (2000). \"The effect of rheumatoid arthritis on the quality of life of primary caregivers.\" J Rheumatol 27(1): 76-83.",null,"das Chagas Medeiros, M. M., et al.","The effect of rheumatoid arthritis on the quality of life of primary caregivers","OBJECTIVE: Rheumatoid arthritis (RA) is a chronic and disabling disease frequently leading to physical and psychological dependence, with considerable economic consequences. Responsibility for care of the patient is taken on by a member of the family called the primary caregiver. Studies of caregivers of patients with RA are scarce. A better understanding of the caregiver's situation could provide interventions that reduce the burden and postpone institutionalization of people with arthritis disability. Our objective was to assess the effect of RA on the quality of life of primary caregivers. METHODS: Sixty-two patients from the rheumatic disease outpatient clinic and their respective caregivers were interviewed. Demographic and clinical data were recorded. Health and psychological status were measured using the Health Assessment Questionnaire (HAQ), Medical Outcomes Survey Short Form 36 (SF-36), Self-Reporting Questionnaire (SRQ-20), and a numerical pain rating scale. Burden of disease on the caregiver was assessed by the Caregiver Burden scale (CB scale). RESULTS: The majority of caregivers were women (82.3%), married (59.7%), mean (SD) age of 39.7 (15.7) years, with children/son (32.7%) or spouse (24.2%), with low education level and low income. Thirty-seven percent displayed psychoemotional disturbance measured by SRQ-20. Emotional aspect and mental health (by SF-36) were the most affected. The mean (SD) score of total burden experienced was 1.82 (0.59). The quality of relationship between caregivers and patients and SF-36 mental health of caregivers were important predictors of burden. CONCLUSION: Caregivers of patients with RA show high prevalence of psychological disturbance. The quality of the relationship between caregivers and patients and the mental health of the caregiver are important predictors of the burden of disease."," J Rheumatol 27(1): 76-83.","Brazil",2000,"Musculoskeletal",null,"CBS","Adults","Observational"]
[36,"Degeneffe, C. E., et al. (2011). \"Development and validation of the Caregiver Empowerment Scale: a resource for working with family caregivers of persons with traumatic brain injury.\" Rehabil Psychol 56(3): 243-250.",null,"Degeneffe, C. E., et al.","Development and validation of the Caregiver Empowerment Scale: a resource for working with family caregivers of persons with traumatic brain injury","OBJECTIVE: To use multitrait analysis to determine the measurement structure of the Caregiver Empowerment Scale (CES). PARTICIPANTS: An American sample of 87 adult primary family caregivers of persons with traumatic brain injury (TBI). RESULTS: A four-factor structure was identified including factor 1 (Advocacy Self-Efficacy), factor 2 (Community Self-Efficacy), factor 3 (Caregiver Self-Efficacy), and factor 4 (Personal Self-Efficacy). CONCLUSIONS: The CES provides clinicians and researchers a means to assess self-perceived coping abilities of family caregivers of persons with TBI."," Rehabil Psychol 56(3): 243-250.","USA",2011,"Neurology",null,"CES","Adults","Validation"]
[37,"Delgado, J. F., et al. (2015). \"Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study.\" Clin Transplant 29(9): 771-780.",null,"Delgado, J. F., et al.","Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study","A multicenter cross-sectional study was conducted to determine the current heart transplant (HTx) outcomes in Spain. Clinical and functional status, health-related quality of life (HRQoL), social support, and caregiver burden were analyzed in 303 adult transplant recipients (77.9% males) living with one functioning graft. Mean age at time of HTx (SD) was 56.4 (11.4) years, and the reason for transplantation in all patients was congestive heart failure. All patients had received a first heart transplant 6 (+/- 1), 12 (+/- 2), 36 (+/- 6), 60 (+/- 10), or 120 (+/- 20) months previously. Participants completed the Kansas City Cardiomyopathy Questionnaire (KCCQ), the EQ-5D, the Duke-UNC Functional Social Support Questionnaire, and the Zarit Caregiver Burden Scale. Reasonable HRQoL, social support, and caregiver burden levels were found at all time points, although a slight decrease in HRQoL was recorded at 120 months (p </= 0.033). Multivariate regression analyses showed that complications, comorbidities, and hospitalizations were associated with HRQoL (EQ-5D: 48.4% of explained variance, F4,164 = 38.46, p < 0.001; KCCQ overall summary score: 45.0%, F3,198 = 54.073, p < 0.001). Patient functional capabilities and complications affected caregiver burden (p < 0.05). In conclusion, HTx patients reported reasonable levels of HRQoL with low caregiver burden. Clinical variables related to these outcomes included functional status, complications, and number of admissions."," Clin Transplant 29(9): 771-780.","Spain",2015,"Cardiac",null,"Zarit,FSS","Adults","Observational"]
[38,"Dhooria, G. S., et al. (2017). \"Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome.\" J Paediatr Child Health 53(4): 354-357.",null,"Dhooria, G. S., et al.","Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome","AIM: Children with nephrotic syndrome (NS) have prolonged disease course with relapses requiring frequent visits and prolonged steroid therapy with their long-term concerns. All these factors affect the child and their families in many domains of functioning. The objective of this study was to assess multidimensional impact on families of children with nephrotic syndrome using (PedsQL) Family Impact Module (FIM). METHODS: This cross-sectional study was conducted in a paediatric nephrology clinic of a tertiary care hospital. Fifty cases of steroid-sensitive nephrotic syndrome between age group of 2-18 years were included, and equal age-sex matched healthy children were taken as controls. Baseline demographic factors including age, gender and education status, modified Kuppuswamy's socio-economic status were collected and clinical variables of NS cases were recorded. FIM is a parent-reported instrument that measures the impact of paediatric chronic health conditions on care giver's HRQOL and their family function. Mean FIM scores were compared among the cases and controls, and different predictive factors affecting family impact (FI) were analysed. RESULTS: The FI total score showed significantly lower scores in cases (mean score: 60.76 +/- 15.66) as compared to controls (mean 100). Among the individual groups, lowest scores were found in two domains, namely 'worry' and 'emotional function' with mean scores of 46.20 +/- 20.66 and 46.80 +/- 24.61, respectively, although other domains were also significantly affected. CONCLUSION: FI score should be evaluated in all cases of NS as parenting such children may significantly affect all domains of family functioning."," J Paediatr Child Health 53(4): 354-357.","India",2017,"Renal",null,"PedsQL-FIM","Children and Adolescents","Observational"]
[39,"Dolinar, R. M., et al. (2000). \"Pilot study of a home-based asthma health education program.\" Patient Educ Couns 40(1): 93-102.",null,"Dolinar, R. M., et al.","Pilot study of a home-based asthma health education program","OBJECTIVE: Caring for a child with asthma can affect the parent's coping and well-being and coping strategies. This study examined the influence of a home-based asthma health education program on parental coping and quality of life. DESIGN: Randomized controlled non-blinded clinical trial. SETTING: Northern community pediatrician's office. PATIENTS: Families whose children, under the age of 11, had chronic stable asthma, and who presented to the pediatrician's office for continuing care; those with an acute exacerbation of asthma were excluded. INTERVENTIONS: Families were randomly assigned to receive either a single two-hour, standardized home-based asthma health education session or a booklet representing conventional care. MAIN OUTCOME MEASURES: One and three-months following the intervention, assessments were obtained for coping measured by Hymovich's Parent Perception Inventory (PPI), quality of life measured by the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) and change in asthma measured by the Caregiver Perception of Change (CPC) survey. RESULTS: Forty families were recruited and randomized; baseline characteristics were similar between groups. At the final follow-up, reduction in parental need for asthma information (p = 0.04), reduction in parental concerns (p = 0.02) and increased use of coping strategies (p = 0.04) were observed in the home-based care group. Improvement was noted in the parent's perception of their child's asthma in the home-based asthma education group (p = 0.01). Quality of life as measured by the PACQLQ remained unchanged over the intervention period (p > 0.05). CONCLUSIONS: These results suggest the use of a one-time, flexible, home-based intervention to assist families caring for children with asthma should be considered and appears effective."," Patient Educ Couns 40(1): 93-102.","Canada",2000,"Respiratory",null,"CPC","Children and Adolescents","RCT"]
[40,"Edwards, B. and L. Ung (2002). \"Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties.\" Cancer Nurs 25(5): 342-349.",null,"Edwards, B. and L. Ung","Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties","The quality of life of caregivers of patients with cancer is an important construct given the substantial impact of caring on the physical, psychological, social, and financial well-being of caregivers. Moreover, caring for patients with cancer also affects family functioning and places burdens on caregivers. The reliability and validity of instruments used to assess the quality of life of caregivers of patients with cancer were reviewed to aid in the selection of the most appropriate measures for research and practice. (1980-2000) and (1982-2000) searches located relevant quality of life instruments using the keywords \"cancer and quality of life\" and \"caregiver or spouse or partner.\" The search identified the following instruments: the Caregiver Quality of Life Index-Cancer Scale, the Caregiver Quality of Life Index, the Quality of Life Tool, and the Quality of Life Index-Cancer Version. Quality of life instruments developed specifically to measure the quality of life of caregivers of patients with cancer had the best psychometric properties. The Caregiver Quality of Life Index-Cancer Scale, in particular, met or exceeded minimum psychometric criteria for reliability and validity. The development of reliable and valid caregiver quality of life measures is an important factor in developing interventions to enhance quality of life of caregivers of patients with cancer."," Cancer Nurs 25(5): 342-349.","International",2002,"Cancer",null,"CQLI","Unspecified","SLR,Validation"]
[41,"Elmstahl, S., et al. (1996). \"Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale.\" Arch Phys Med Rehabil 77(2): 177-182.",null,"Elmstahl, S., et al.","Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale","OBJECTIVE: To assess burden of caregivers to stroke patients three year after primary stroke and to test validity and reliability of a novel caregiver burden scale (CB scale). DESIGN: A longitudinal community-based 3-year follow-up study of 35 consecutive primary stoke patients initially admitted to an Acute Medical Unit (mean age 82 yr). The validity of the CB scale was studied in 150 patients (mean age 77 yr): 83 demented outpatients with stroke from a general geriatric day-care unit. Reliability was studied in another 23 outpatients (mean age 72 yr) with stroke from the same unit. METHODS: A 22-item CB scale for different types of caregiver burden and scales for neuroticism and extroversion (Eysenck Personality Inventory) and quality of life (11-item scale). Activities of daily life were assessed by a 6-item, scale, initially and 3 years later. OUTCOME MEASURE: Reliability and validity of the CB scale. Improvements of activities of daily life of stroke patients. RESULTS: Factor analyses of the CB scale gave five indices--general strain, isolation, disappointment, emotional involvement, and environment--having good kappa values, .89 to 1.00 and Cronbach's alpha, .70 to .87, except for environment. A higher burden was related to a closer relationship but not to the living situation. The highest caregiver burden was found among patients showing the greatest improvements of ADL, when divided into tertiles. The patient's degree of extroversion and quality of life were negatively correlated to caregiver burden, -.46(p < .05) and .59(p < .01). CONCLUSIONS: The CB scale proved to be a valid and reliable instrument to assess caregiver burden. To improve the caregiver situation, individual patient personality characteristics, like extroversion, feeling of quality of life, and progression of the disease, must be considered."," Arch Phys Med Rehabil 77(2): 177-182.","Sweden",1996,"Stroke",null,"CBS","Older Persons","Validation"]
[42,"Fjaertoft, H., et al. (2004). \"Acute stroke unit care combined with early supported discharge. Long-term effects on quality of life. A randomized controlled trial.\" Clin Rehabil 18(5): 580-586.",null,"Fjaertoft, H., et al.","Acute stroke unit care combined with early supported discharge. Long-term effects on quality of life. A randomized controlled trial","OBJECTIVES: The aim of the present trial was to compare the effects of an extended stroke unit service (ESUS) with the effects of an ordinary stroke unit service (OSUS) on long-term quality of life (QoL). DESIGN: One year follow-up of a randomized controlled trial with 320 acute stroke patients allocated either to OSUS (160 patients) or ESUS (160 patients) with early supported discharge and follow-up by a mobile team. The intervention was a mobile team and close co-operation with the primary health care service. All assessments were blinded. MAIN OUTCOME MEASURE: Primary outcome of QoL in this paper was measured by the Nottingham Health Profile (NHP) at 52 weeks. Secondary outcomes measured at 52 weeks were differences between the groups measured by the Frenchay Activity Index, Montgomery-Asberg Depression Scale, Mini-Mental State Score and the Caregivers Strain Index. RESULTS: The ESUS group had a significantly better QoL (mean score 78.9) assessed by global NHP after one year than the OSUS group (mean score 75.2) (p =0.048). There were no significant differences between the groups in the secondary outcomes, but a trend in favour of ESUS. Caregivers Strain Index showed a mean score of 23.3 in the ESUS group and 22.6 in the OSUS group (p=0.089). CONCLUSION: It seems that stroke unit treatment combined with early supported discharge in addition to reducing the length of hospital stay can improve long-term QoL. However, similar trials are necessary to confirm the benefit of this type of service."," Clin Rehabil 18(5): 580-586.","Norway",2004,"Stroke",null,"CSI","Adults","RCT"]
[43,"Flynn Longmire, C. V., et al. (2014). \"Is sertraline treatment or depression remission in depressed Alzheimer patients associated with improved caregiver well being? Depression in Alzheimer's Disease Study 2.\" Am J Geriatr Psychiatry 22(1): 14-24.",null,"Flynn Longmire, C. V., et al.","Is sertraline treatment or depression remission in depressed Alzheimer patients associated with improved caregiver well being? Depression in Alzheimer's Disease Study 2","OBJECTIVE: We wanted to assess if sertraline treatment (versus placebo) or remission of depression at 12 weeks (versus nonremission) in Alzheimer patients is associated with improved caregiver well being. METHODS: We conducted a randomized, double-blind, placebo-controlled clinical trial of the efficacy and safety of sertraline for the treatment of depression in individuals with Alzheimer disease in five clinical research sites across the United States. Participants were caregivers of patients enrolled in the Depression in Alzheimer's Disease Study 2 (N = 131). All caregivers received standardized psychosocial support throughout the study. Caregiver outcome measures included depression (Beck Depression Inventory), distress (Neuropsychiatric Inventory), burden (Zarit Burden Interview), and quality of life (Medical Outcomes Study Short Form Health Survey). RESULTS: Fifty-nine percent of caregivers were spouses, 63.4% were women, and 64.1% were white. Caregivers of patients in both treatment groups had significant reductions in distress scores over the 24-week study period, but there was not a greater benefit for caregivers of patients taking sertraline. However, caregivers of patients whose depression was in remission at week 12 had greater declines in distress scores over the 24 weeks than caregivers of patients whose depression did not remit by week 12. CONCLUSION: Patient treatment with sertraline was not associated with significantly greater reductions in caregiver distress than placebo treatment. Distress but not level of depression or burden lessened for all caregivers regardless of remission status and even more so for those who cared for patients whose depression remitted. Results imply an interrelationship between caregiver distress and patient psychiatric outcomes."," Am J Geriatr Psychiatry 22(1): 14-24.","USA",2014,"Dementia",null,"Zarit","Older Persons","RCT"]
[44,"Forster, A., et al. (2009). \"Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study.\" Age Ageing 38(5): 576-583.",null,"Forster, A., et al.","Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study","BACKGROUND: national policy recommends routine re-assessment of disabled patients and their carers at 6 months after stroke onset. The clinical and resource outcomes of this policy were investigated. DESIGN: prospective, single-blind, randomised controlled trial in two centres. PARTICIPANTS: a total of 265 patients with a disabling stroke and their carers. INTERVENTIONS: a structured re-assessment system for patients and their carers at 6 months post-stroke or existing care. OUTCOME MEASURES: primary: patient independence (Frenchay activities index) and carer stress (general health questionnaire 28). Secondary: activities of daily living, mood state, satisfaction with services, carer strain index, health and social service resource use and costs. RESULTS: independence at 12 months post-stroke was similar in both groups (Frenchay activities index, adjusted mean difference 0.64; 95% confidence interval -0.74-2.02). Emotional distress in carers was similar in both groups (general health questionnaire 28, mean difference 0.02; 95% confidence interval -0.95-1.00). Results for the secondary outcome measures and total mean costs were similar for both groups. The intervention group patients used 301 fewer hospital bed days and 1,631 fewer care home bed days. CONCLUSIONS: the structured, systematic re-assessment for patients and their carers was not associated with any clinically significant evidence of benefit at 12 months. Health and social care resource use and mean cost per patient were broadly similar in both groups. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Register; number: ISRCTN55412871."," Age Ageing 38(5): 576-583.","UK",2009,"Stroke",null,"CSI","Adults","RCT"]
[45,"Forster, A., et al. (2013). \"A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial.\" Health Technol Assess 17(46): 1-216.",null,"Forster, A., et al.","A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial","BACKGROUND: The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver. OBJECTIVE: To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective. DESIGN: A pragmatic, multicentre, cluster randomised controlled trial. SETTING: Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care. PARTICIPANTS: A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient. INTERVENTION: The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation. MAIN OUTCOME MEASURES: The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months. RESULTS: No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year. CONCLUSIONS: We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams. TRIAL REGISTRATION: Current Controlled Trials ISRCTN49208824. FUNDING: This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information."," Health Technol Assess 17(46): 1-216.","UK",2013,"Stroke",null,"CBS","Adults","RCT"]
[46,"Forster, A., et al. (2013). \"A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.\" Lancet 382(9910): 2069-2076.",null,"Forster, A., et al.","A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis","BACKGROUND: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke. METHODS: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824. FINDINGS: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27.4 in the intervention group versus 27.6 in the control group, difference -0.2 points [95% CI -3.0 to 2.5], p value=0.866, ICC=0.027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45.5 in the intervention group versus 45.0 in the control group, difference 0.5 points [95% CI -1.7 to 2.7], p value=0.660, ICC=0.013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were pound13,127 for the intervention group and pound12,471 for the control group; adjusted mean difference pound1243 [95% CI -1533 to 4019]; p value=0.380). Probabilities of cost-effectiveness based on QALYs were low. INTERPRETATION: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training. FUNDING: Medical Research Council."," Lancet 382(9910): 2069-2076.","UK",2013,"Stroke",null,"CBS","Adults","RCT"]
[47,"Garcia-Fernandez, F. P., et al. (2014). \"Effect of hospital case-manager nurses on the level of dependence, satisfaction and caregiver burden in patients with complex chronic disease.\" J Clin Nurs 23(19-20): 2814-2821.",null,"Garcia-Fernandez, F. P., et al.","Effect of hospital case-manager nurses on the level of dependence, satisfaction and caregiver burden in patients with complex chronic disease","AIMS AND OBJECTIVES: To determine the medium-term effects of nurse case management on the dependence and satisfaction of patients with complex chronic disease and on caregiver burden. BACKGROUND: Caregiver exhaustion increases the readmission rate of highly dependent patients with complex chronic disease and their consumption of primary care resources. DESIGN: An observational and analytical cohort study was undertaken in multimorbid patients. METHODS: Data were gathered on Barthel Index and Caregiver Burden Index scores, primary care resource consumption, readmission and mortality rates, and patient satisfaction with care and care continuity. Results were compared between nurse case-managed (n = 62) and control (n = 193) multimorbid patients using univariate and bivariate analyses. RESULTS: The study included 255 patients with complex chronic disease (24.32% in management cohort vs. 75.68% in control cohort). The nurse case-managed group had significantly lower Barthel Index and higher Caregiver Burden Index scores and a significantly longer hospital stay. At 90 days postdischarge, no significant intergroup differences were observed in Barthel Index or Caregiver Burden Index scores, primary care resource consumption, readmission rate or mortality rate; the case-managed patients showed a significantly higher satisfaction level with their care and its continuity. CONCLUSIONS: Nurse case management prevents a postdischarge increase in the dependence of multimorbid patients and the burden of their caregivers. RELEVANCE TO CLINICAL PRACTICE: Application of nurse case management can reduce the readmission rate and primary care consumption of patients with chronic complex disease after their hospital stay and prevent an exacerbation of caregiver exhaustion."," J Clin Nurs 23(19-20): 2814-2821.","Spain",2014,"Unspecified",null,"CBI","Unspecified","Observational"]
[48,"Gauthier, A., et al. (2007). \"A longitudinal study on quality of life and depression in ALS patient-caregiver couples.\" Neurology 68(12): 923-926.",null,"Gauthier, A., et al.","A longitudinal study on quality of life and depression in ALS patient-caregiver couples","OBJECTIVES: To evaluate the modification of quality of life (QoL) and depression in a series of amyotrophic lateral sclerosis (ALS) patient-caregiver couples during a period of 9 months and compare them to patients' ALS Functional Rating Scale (ALS-FRS). METHODS: Depression was assessed with Zung Depression Scale (ZDS) and QoL with McGill Quality of Life Questionnaire (MQoL). Caregivers' burden was assessed with Caregiver Burden Inventory (CBI), and patients' feeling to be a burden with the Self-Perceived Burden Scale (SPBS). RESULTS: Thirty-one ALS patient-caregiver couples were interviewed at baseline and after 9 months. The mean ALS-FRS score was 28.7 (SD 7) at baseline and 24.1 (6.9) at the second interview (p = 0.0001). Patients' mean MQoL score slightly increased from 6.8 (1.6) to 7 (1.1) (p = 0.07); their ZDS score slightly increased (43.2 [8.7] at baseline and 45.7 [9.3] at the second interview) but they remained in the not depressed range. Caregivers' mean MQoL score slightly decreased, and their mean ZDS increased from 38.9 (8.1) to 42.2 (8.7) (p = 0.02). The mean CBI score increased from 50.3 (17.6) to 55.8 (16.4) (p = 0.03). CONCLUSIONS: We found a substantial steadiness of quality of life and depression in patients with amyotrophic lateral sclerosis over a 9-month period, vs a significant increase of burden and depression of their caregivers."," Neurology 68(12): 923-926.","Italy",2007,"ALS",null,"CBI","Unspecified","Observational"]
[49,"Geng, D., et al. (2017). \"Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.\" J Clin Nurs 26(19-20): 3188-3199.",null,"Geng, D., et al.","Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study","AIMS AND OBJECTIVES: This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. BACKGROUND: Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. DESIGN: A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. METHODS: Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. RESULTS: Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. CONCLUSION: With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. RELEVANCE TO CLINICAL PRACTICE: Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients might benefit patients in China or other South-East Asian countries under the Confucian concept of ethics. There is an urgent demand to expand medical insurance coverage to cover amyotrophic lateral sclerosis in China and other developing countries. Long and adequate supports are needed for relieving caregiver's burden. To improve the quality of life of patients, relieving the patients' SBP and caregivers' burden is likely to be not only required, but also essential."," J Clin Nurs 26(19-20): 3188-3199.","China",2017,"ALS",null,"Zarit","Unspecified","Observational"]
[50,"Giovannetti, E. R., et al. (2009). \"Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients.\" Value Health 12(6): 1011-1017.",null,"Giovannetti, E. R., et al.","Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients","OBJECTIVES: To assess the validity of the Work Productivity and Activity Impairment questionnaire as adapted for caregiving (WPAI:CG) to measure productivity loss (hours missed from work, impairment while at work, and impairment in regular activities) due to unpaid caregiving for medically complex older adults. METHODS: The WPAI:CG was administered along with the Caregiver Strain Index (CSI) and Center for Epidemiologic Studies Depression Scale (CESD) to a caregiving population (N = 308) enrolled with their older, medically complex care-recipient in a cluster-randomized controlled study. Correlation coefficients were calculated between each productivity variable derived from the WPAI:CG and CSI/CESD scores. Nonparametric tests for trend across ordered groups were carried out to examine the relationship between each productivity variable and the intensity of the caregiving. RESULTS: Significant positive correlations were found between work productivity loss and caregiving-related strain (r = 0.45) and depression (r = 0.30). Measures of productivity loss were also highly associated with caregiving intensity (P < 0.05) and care-recipient medical care use (P < 0.05). The average employed caregiver reported 1.5 hours absence from work in the previous week and 18.5% reduced productivity while at work due to caregiving. Employed and nonemployed caregivers reported 27.2% reduced productivity in regular activities in the previous week. CONCLUSION: The results indicate high convergent validity of the WPAI:CG questionnaire. This measure could facilitate research on the cost-effectiveness of caregiver-workplace interventions and provide employers and policy experts with a more accurate and comprehensive estimate of caregiving-related costs incurred by employers and society."," Value Health 12(6): 1011-1017.","USA",2009,"Unspecified",null,"CSI","Older Persons","Validation"]
[51,"Goncalves-Pereira, M., et al. (2017). \"Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ).\" Health Qual Life Outcomes 15(1): 63.",null,"Goncalves-Pereira, M., et al.","Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ)","BACKGROUND: The Zarit Burden Interview (ZBI) was originally developed to assess the level of subjective burden in caregivers of people with dementia. The Involvement Evaluation Questionnaire (IEQ) is amongst the leading scales to assess caregiving consequences in severe mental illness. We aimed to compare the psychometric properties of the ZBI, a generic tool, and of the IEQ, a more specific tool to assess the consequences of caregiving in schizophrenia and related disorders. METHODS: Secondary analyses of a 16-week, randomized controlled trial of a psychoeducational intervention in 223 primary caregivers of patients with schizophrenia or schizoaffective disorder. Psychometric properties (internal consistency, convergent and discriminative validity, and sensitivity to change) were evaluated for both ZBI and IEQ. RESULTS: Internal consistency was good and similar for both scales (ZBI: 0.91, 95% CI: 0.89, 0.94; IEQ: 0.86, 95% CI: 0.83, 0.89). Convergent validity was relevant for similar domains (e.g. ZBI total score vs IEQ-tension r = 0.69, 95% CI: 0.61, 0.75) and at least moderate for the rest of domains (ZBI total score, personal strain and role strain vs IEQ-urging and supervision). Discriminative validity against psychological distress and depressive symptoms was good (Area Under the Curve [AUC]: 0.77, 95% CI: 0.71, 0.83; and 0.69, 95% CI: 0.63, 0.78 - for ZBI against GHQ-28 and CES-D respectively; and AUC: 0.72, 95% CI: 0.65, 0.78; and 0.69, 95% CI: 0.62, 0.77 - for IEQ against GHQ-28 and CES-D respectively). AUCs against the reference criteria did not differ significantly between the two scales. After the intervention, both scales showed a significant decrease at endpoint (p-values < 0.001) with similar standardised effect sizes for change (-0.36, 95% CI: -0.58, -0.15 - for ZBI; -0.39, 95% CI: -0.60, -0.18 - for IEQ). CONCLUSIONS: Both ZBI and IEQ have shown satisfactory psychometric properties to assess caregiver burden in this sample. We provided further evidence on the performance of the ZBI as a general measure of subjective burden. TRIAL REGISTRATION: ( ISRCTN32545295 )."," Health Qual Life Outcomes 15(1): 63.","Portugal,Spain",2017,"Psychiatric",null,"Zarit,IEQ","Unspecified","Validation"]
[52,"Goranitis, I., et al. (2014). \"An investigation into the construct validity of the Carer Experience Scale (CES).\" Qual Life Res 23(6): 1743-1752.",null,"Goranitis, I., et al.","An investigation into the construct validity of the Carer Experience Scale (CES)","PURPOSE: The Carer Experience Scale (CES) is an index measure of the caring experience, focusing on six domains: activities outside caring, support from family and friends, assistance from the government and other organizations, fulfilment from caring, control over caring and getting on with the care recipient. This is an initial study of the construct validity of the CES focusing on validity in a heterogeneous group of carers in the UK. METHODS: The CES was included in a cross-sectional quality of life survey conducted in a UK city in 2010. The survey included a number of questions about the characteristics of the carer, care recipient, caring situation and motivation for caring. Hypotheses regarding the anticipated associations between these contextual variables and the caring experience were developed and statistically tested. RESULTS: Seven hundred and thirty carers fully completed the CES questionnaire. Associations between variables hypothesised to relate to the caring experience (such as recipient health and intensity of caring) and the CES were largely as expected, providing evidence that the CES captures the caring experience in a valid way. Most hypothesised associations were statistically significant in both carers of older and younger adults. CONCLUSIONS: This study provides early encouraging evidence for the construct validity of the CES instrument. Further investigation is required to examine the validity of the CES in specific clinical subgroups and to examine the responsiveness of the CES in detecting changes in the carer's outcomes over time."," Qual Life Res 23(6): 1743-1752.","UK",2014,"Unspecified",null,"CExS","Adults","Validation"]
[53,"Goursand, D., et al. (2009). \"Family Impact Scale (FIS): psychometric properties of the Brazilian Portuguese language version.\" Eur J Paediatr Dent 10(3): 141-146.",null,"Goursand, D., et al.","Family Impact Scale (FIS): psychometric properties of the Brazilian Portuguese language version","AIM: Evaluate the psychometric properties of the Brazilian version of the Family Impact Scale (FIS). METHODS: Following translation and cross-cultural adaptation, the FIS was tested on 123 parents-caregivers of children between 11 and 14 years of age with dental caries and malocclusions. The parents were recruited from the Paediatric Dental and Orthodontic clinics where their children were receiving dental care. Psychometric properties were assessed through internal consistency, test-retest reliability, construct validity and discriminant validity. RESULTS: The mean FIS score was 6.97 (SD 7.81) for the dental caries group and 7.25 (SD 7.70) for the malocclusion group. The FIS score was unable to discriminate different family impact caused by children's oral health conditions. Internal consistency was confirmed by a Cronbach's alpha coefficient of 0.79. Test-retest reliability revealed good reproducibility (ICC 0.83). Construct validity was good, demonstrating highly significant correlations between parent's perceptions regarding the overall wellbeing indicator for their children and the total FIS and subscales. Financial burden demonstrated no significant correlation with global indicators. CONCLUSIONS: Overall psychometric results for the Brazilian version of the FIS confirm it as a reliable, valid questionnaire for assessing the family impact caused by children's oral conditions."," Eur J Paediatr Dent 10(3): 141-146.","Brazil",2009,"Oral Health",null,"FIS","Children and Adolescents","Validation"]
[54,"Govina, O., et al. (2013). \"Validation of the revised Bakas Caregiving Outcomes Scale in Greek caregivers of patients with advanced cancer receiving palliative radiotherapy.\" Support Care Cancer 21(5): 1395-1404.",null,"Govina, O., et al.","Validation of the revised Bakas Caregiving Outcomes Scale in Greek caregivers of patients with advanced cancer receiving palliative radiotherapy","PURPOSE: Caregiver burden considerably affects the lives of families providing care to people with advanced cancer. The aim of this study was to validate the Greek translation of the revised Bakas Caregiving Outcomes Scale (BCOS) with a sample of informal caregivers of people with advanced cancer receiving outpatient palliative radiotherapy. METHODS: Following a formal \"forward-backward\" method to translate the original BCOS into Greek, the scale was administered to 100 consecutive family caregivers. Participants also completed the Greek Hospital Anxiety and Depression Scale (G-HADS) and five quality-of-life related linear analogue scale assessment (LASA) scales. Validity and reliability analyses were performed. RESULTS: The Cronbach's alpha coefficient for the total BCOS score was 0.83. Test-retest reliability analysis in a subgroup of caregivers (n = 40) revealed good short-term stability over a 2-week interval. Exploratory factor analysis generated a one-factor structure for the Greek translation, which was further confirmed through confirmatory factor analysis. Construct validity was supported through the scale's high correlations with G-HADS anxiety (-0.524; p < 0.001) and depression (-0.533; p < 0.001) scores, and LASA quality of life scores (0.696; p < 0.001). The BCOS discriminated well between groups of caregivers with different levels of quality of life. A total score of 52.5 offered high sensitivity (91 %) and specificity (86 %) in detecting highly burdened caregivers. CONCLUSIONS: The Greek version of the BCOS is a psychometrically sound instrument that can be usefully implemented into clinical practice to identify family caregivers in need for support, and stimulate relevant research in our country."," Support Care Cancer 21(5): 1395-1404.","Greece",2013,"Cancer",null,"BCOS","Unspecified","Validation"]
[55,"Griva, K., et al. (2016). \"Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.\" Qual Life Res 25(2): 373-384.",null,"Griva, K., et al.","Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis","PURPOSE: Assisted peritoneal dialysis (PD) involving caregivers allows more patients to get started on home-based dialysis with good clinical outcomes, but evidence on patient-reported and caregiver-reported outcomes is lacking. This study aimed to compare assisted PD versus self-care PD on quality of life (QoL) and psychosocial outcomes for patients and caregivers. The effect of PD modality [automated PD (APD); continuous ambulatory PD (CAPD)] in relation to self-care or assisted care was also examined. METHODS: A cross-sectional sample of 231 PD patients [142 self-care (57 APD/85 CAPD) and 89 assisted care PD (45 APD/44 CAPD)], 72 caregivers of assisted PD patients and 39 family members of self-care PD patients completed the Kidney Disease Quality of Life Short Form (KDQOL-SF), World Health Organisation Quality of Life Instrument-brief and the Hospital Anxiety and Depression Scale. Caregivers and family members completed the Lay Care-Giving for Adults Receiving Dialysis questionnaire and Zarit Burden Interview. RESULTS: Case-mix-adjusted comparisons indicated comparable QoL in all dimensions with the exception of physical SF-12 (p = .001) and the KDQOL effects of kidney disease in favour of self-care PD. Levels of anxiety (9.72 +/- 4.90; 8.25 +/- 5.22) and depression (8.63 +/- 3.80; 6.35 +/- 4.76) were equivalent in assisted PD and self-care PD, respectively. Assisted PD caregivers reported more task-orientated duties (p = .007), yet levels of perceived burden were equal to those reported by family members of self-care PD. CONCLUSION: Our findings of mostly comparable patient and caregiver outcomes in assisted PD and self-care PD suggest that caregiver burden and QoL should not be a barrier to using assisted PD."," Qual Life Res 25(2): 373-384.","Singapore",2016,"Renal",null,"Zarit","Adults","Observational"]
[56,"Grunfeld, E., et al. (2004). \"Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers.\" Cmaj 170(12): 1795-1801.",null,"Grunfeld, E., et al.","Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers","BACKGROUND: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. METHODS: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score < or = 50). RESULTS: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. INTERPRETATION: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving."," Cmaj 170(12): 1795-1801.","Canada",2004,"Cancer",null,"Zarit","Adults","Observational"]
[57,"Gunnell, D., et al. (2000). \"How great a burden does early discharge to hospital-at-home impose on carers? A randomized controlled trial.\" Age Ageing 29(2): 137-142.",null,"Gunnell, D., et al.","How great a burden does early discharge to hospital-at-home impose on carers? A randomized controlled trial","OBJECTIVE: to assess the effects of an early discharge hospital-at-home scheme on self-reported carer strain and quality of life. DESIGN: a randomized controlled trial SETTING: Bristol, UK. SUBJECTS: 133 carers of patients receiving either early discharge from hospital to hospital-at-home (n = 93) care or usual hospital care and discharge (n = 40). OUTCOME MEASURES: modified 12-item Carer Strain Index, COOP-WONCA charts and EuroQol EQ-5D at 4 weeks and 3 months post-randomization. RESULTS: the mean age of carers was 65 years; 56% were women. There were no marked differences between the groups in any of the outcomes used at either 4-week or 3-month follow-up. CONCLUSION: there was no evidence of increased self-reported burden imposed on carers of patients discharged early from hospital. Decisions on the implementation of hospital-at-home schemes should be influenced by considerations of cost and effectiveness rather than effects on carers. The effects on carers may, however, differ for other forms of home-based care."," Age Ageing 29(2): 137-142.","UK",2000,"Unspecified",null,"CSI","Unspecified","RCT"]
[58,"Gustavsson, A., et al. (2010). \"Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study.\" J Nutr Health Aging 14(8): 648-654.",null,"Gustavsson, A., et al.","Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study","OBJECTIVES: This study aimed to estimate the costs of formal and informal care of patients with Alzheimer's disease, to compare care costs across European countries and identify potential differences in cost patterns between countries and regions. SETTING: The ICTUS study is a prospective, naturalistic observational study conducted in specialised memory clinics in 12 European countries. In total, 1385 patients diagnosed with Alzheimer's disease were enrolled at baseline. All subjects had a reliable informant (primary caregiver) and informed consent was obtained from patients or their primary caregiver. MAIN OUTCOME MEASURES: Resource utilization data was captured with the RUD Lite (Resource Utilization in Dementia) instrument and caregiver burden with the Zarit Burden Interview (ZBI). Patient disease severity was measured with the Mini-Mental State Examination (MMSE), Alzheimer's Disease Assessment Scale-Cognitive subscale (ADAS-cog), Katz index (PADL), Instrumental activities of daily living (IADL) scale and Neuropsychiatric inventory (NPI). RESULTS: The mean annual cost of care per patient was estimated to euro7,820 (95% CI: euro7,194-euro8,446), whereof 54% were costs of informal care, 16% direct medical costs and 30% community care costs. There were substantial differences in total resource utilization and also in the balance between formal and informal care between Northern, Western and Southern Europe. PADL scores were strongly associated with formal care costs while IADL scores correlated strongly with informal care costs. CONCLUSIONS: Costs of Alzheimer's disease are high across European countries. Activities of daily living is an important determinant of care costs. Formal care service use is lower and informal care higher in Southern Europe compared to Western and Northern Europe. Differences in resource utilization patterns are important to consider in international studies of dementia care costs as well as in economic evaluations of new treatments for dementia."," J Nutr Health Aging 14(8): 648-654.","UK",2010,"Dementia",null,"Zarit","Older Persons","Observational"]
[59,"Hakkaart-van Roijen, L., et al. (2013). \"Economic evaluation alongside a single RCT of an integrative psychotherapeutic nursing home programme.\" BMC Health Serv Res 13: 370.",null,"Hakkaart-van Roijen, L., et al.","Economic evaluation alongside a single RCT of an integrative psychotherapeutic nursing home programme","BACKGROUND: There is an 80% prevalence of two or more psychiatric symptoms in psychogeriatric patients. Multiple psychiatric symptoms (MPS) have many negative effects on quality of life of the patient as well as on caregiver burden and competence. Irrespective of the effectiveness of an intervention programme, it is important to take into account its economic aspects. METHODS: The economic evaluation was performed alongside a single open RCT and conducted between 2001 and 2006. The patients who met the selection criteria were asked to participate in the RCT. After the patient or his caregiver signed a written informed consent form, he was then randomly assigned to either IRR or UC.The costs and effects of IRR were compared to those of UC. We assessed the cost-utility of IRR as well as the cost-effectiveness of both conditions. Primary outcome variable: severity of MPS (NPI) of patients; secondary outcome variables: general caregiver burden (CB) and caregiver competence (CCL), quality of life (EQ5D) of the patient, and total medical costs per patient (TiC-P). Cost-utility was evaluated on the basis of differences in total medical costs). Cost-effectiveness was evaluated by comparing differences of total medical costs and effects on NPI, CB and CCL (Incremental Cost-Effectiveness Ratio: ICER). CEAC-analyses were performed for QALY and NPI-severity. All significant testing was fixed at p<0.05 (two-tailed). The data were analyzed according to the intention-to-treat (ITT)-principle. A complete cases approach (CC) was used. RESULTS: IRR turned out to be non-significantly, 10.5% more expensive than UC (euro 36 per day). The number of QALYs was 0.01 higher (non-significant) in IRR, resulting in euro 276,290 per QALY. According to the ICER-method, IRR was significantly more cost-effective on NPI-sum-severity of the patient (up to 34%), CB and CCL (up to 50%), with ICERs varying from euro 130 to euro 540 per additional point of improvement. CONCLUSIONS: No significant differences were found on QALYs. In IRR patients improved significantly more on severity of MPS, and caregivers on general burden and competence, with incremental costs varying from euro 130 to euro 540 per additional point of improvement. The surplus costs of IRR are considered acceptable, taking into account the high societal costs of suffering from MPS of psychogeriatric patients and the high burden of caregivers. The large discrepancy in economic evaluation between QALYs (based on EQ5D) and ICERs (based on clinically relevant outcomes) demands further research on the validity of EQ5D in psychogeriatric cost-utility studies. (Trial registration nr.: ISRCTN 38916563; December 2004)."," BMC Health Serv Res 13: 370.","Netherlands",2013,"Psychiatric",null,"CBS,CCL","Older Persons","RCT"]
[60,"Harkness, K. I. and J. E. Tranmer (2007). \"Measurement of the caregiving experience in caregivers of persons living with heart failure: a review of current instruments.\" J Card Fail 13(7): 577-587.",null,"Harkness, K. I. and J. E. Tranmer","Measurement of the caregiving experience in caregivers of persons living with heart failure: a review of current instruments","BACKGROUND: Current evidence suggests that caring for someone with heart failure (HF) often imposes physical and emotional demands on primary caregivers that may lead to emotional distress or impaired quality of life. The purpose of this literature review was to provide a comprehensive description of the measurement tools used for assessing the subjective experience of primary caregivers for persons living with HF. METHODS: CINHAL, MEDLINE, EMBASE, PsychINFO, the Cochrane Collaboration, and PubMed databases (1985 to June 2006) were searched for studies that directly measured the caregiving experience. RESULTS: Seven studies yielding 6 different instruments were reviewed. The majority of studies were cross-sectional, descriptive, and correlational designs. Caregivers were predominately female spouses with a mean age ranging from 54 to 63 years. CONCLUSIONS: Limitations in study designs and nonstandardized approaches to measurement of caregiving limit the ability to confidently recommend a specific existing tool for measuring this construct in the population with HF. However, on the basis of the results from this review, the Caregiver Reaction Assessment tool seems to have the greatest potential for quantitatively measuring the subjective experience of caregiving in HF. Its ease of administration, strong psychometric properties in the medical populations, and attention to the positive and negative experiences associated with caregiving make it a most promising generic tool."," J Card Fail 13(7): 577-587.","International",2007,"Cardiac",null,"CRA","Adults","SLR"]
[61,"Harkness, K., et al. (2013). \"The measurement of uncertainty in caregivers of patients with heart failure.\" J Nurs Meas 21(1): 23-42.",null,"Harkness, K., et al.","The measurement of uncertainty in caregivers of patients with heart failure","BACKGROUND AND PURPOSE: Family caregivers of heart failure (HF) patients describe feelings of uncertainty; however, studies measuring uncertainty in caregivers of HF patients are extremely sparse. This study examined the validity and reliability of the Mishel Uncertainty in Illness Scale-Family Member form (PPUS-FM) in caregivers of HF patients. METHODS: Caregivers (n = 50) of community-dwelling HF patients completed the PPUS-FM, Caregiver Reaction Assessment (CRA) and Hospital Anxiety and Depression Scale (HADS) in this cross-sectional study. RESULTS: Significant correlations emerged among PPUS-FM and (a) CRA-schedule burden (p = .499, p < .01); (b) CRA-financial burden (p = .292, p < .05); (c) CRA-family burden (p = .385, p < .01); (d) CRA-health burden (p = .421; p < .01); and (e) HADS-depression scores (p = -.298, p <.05). Cronbach's alpha for the PPUS-FM was .89. CONCLUSIONS: In this sample, the PPUS-FM had some evidence of construct validity and good internal consistency. However, the respondent burden and unidimensional nature of the PPUS-FM suggest that this tool needs further revision and testing for use with caregivers of HF patients."," J Nurs Meas 21(1): 23-42.","Canada",2013,"Cardiac",null,"CRA","Adults","Validation"]
[62,"Haro, J. M., et al. (2014). \"Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours.\" J Nutr Health Aging 18(7): 677-684.",null,"Haro, J. M., et al.","Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours","OBJECTIVES: This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer's disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden. DESIGN AND SETTING: GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity. PARTICIPANTS: 1497 community-dwelling AD patients and their primary caregivers. MEASUREMENTS: Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden. RESULTS: Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time. CONCLUSION: Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden."," J Nutr Health Aging 18(7): 677-684.","France,Germany,UK",2014,"Dementia",null,"Zarit","Older Persons","Observational"]
[63,"Harris, R., et al. (2005). \"The effectiveness, acceptability and costs of a hospital-at-home service compared with acute hospital care: a randomized controlled trial.\" J Health Serv Res Policy 10(3): 158-166.",null,"Harris, R., et al.","The effectiveness, acceptability and costs of a hospital-at-home service compared with acute hospital care: a randomized controlled trial","OBJECTIVE: To compare the safety, effectiveness, acceptability and costs of a hospital-at-home programme with usual acute hospital inpatient care. METHOD: Patients aged 55 years or over being treated for an acute medical problem were randomized to receive either standard inpatient hospital care or hospital-at-home care. Follow-up was for 90 days after randomization. Health outcome measures included physical and mental function, self-rated recovery, health status as assessed by the SF-36, adverse events and readmissions to hospital. Acceptability was assessed using satisfaction surveys and the Carer Strain Index. Costs comprised hospital care, care in the home, community services, general practitioner services and personal health care expenses. RESULTS: In all, 285 people were randomized with a mean age of 80 years. There were no significant differences in health outcome measures between the two randomized groups. Significantly more patients receiving care at home reported high levels of satisfaction, as did more of their relatives. Relatives of the care-at-home group also reported significantly lower scores on the Carer Strain Index. However, the mean cost per patient was almost twice for patients treated at home (NZ 6524 dollars) as for standard hospital care (NZ 3525 dollars). A sensitivity analysis indicated that, if the service providing care in the home had been operating at full capacity, the mean cost per patient episode would have been similar for both modes of care. CONCLUSIONS: This hospital-at-home programme was found to be more acceptable and as effective and safe as inpatient care. While caring for patients at home was significantly more costly than standard inpatient care, this was largely due to the hospital-at-home programme not operating at full capacity."," J Health Serv Res Policy 10(3): 158-166.","New Zealand",2005,"Unspecified",null,"CSI","Older Persons","RCT"]
[64,"Harwood, M., et al. (2012). \"Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life--a randomized controlled trial.\" Clin Rehabil 26(6): 493-501.",null,"Harwood, M., et al.","Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life--a randomized controlled trial","OBJECTIVE: Few community interventions following stroke enhance activity, participation or quality of life. We tested two novel community interventions designed to promote self-directed rehabilitation following stroke. DESIGN: This was a randomized, controlled parallel group 2x2 trial. SETTING: Community. PARTICIPANTS: Maori and Pacific New Zealanders, >15 years old, randomized within three months of a new stroke. INTERVENTIONS: A DVD of four inspirational stories by Maori and Pacific people with stroke and a 'Take Charge Session'--a single structured risk factor and activities of daily living assessment, designed to facilitate self-directed rehabilitation. MAIN MEASURES: Primary outcomes were Health-related Quality of Life (Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the Short Form 36 (SF-36)) 12 months from randomization. Secondary outcomes were Barthel Index, Frenchay Activities Index, Carer Strain Index and modified Rankin score. RESULTS: One hundred and seventy-two people were randomized with 139 (80.8%) followed up at 12 months post randomization. The effect of the Take Charge Session on SF-36 PCS at 12 months was 6.0 (95% confidence interval (CI) 2.0 to 10.0) and of the DVD was 0.9 (95% CI -3.1 to 4.9). Participants allocated to the Take Charge Session were less likely to have a modified Rankin score of >2 (odds ratio (OR) 0.42, 95% CI 0.2 to 0.89) and their carers had lower (better) Carer Strain Index scores (-1.5, 95% CI -2.8 to -0.1). CONCLUSION: A simple, low-cost intervention in the community phase of stroke recovery aiming to promote self-directed rehabilitation improved outcomes."," Clin Rehabil 26(6): 493-501.","New Zealand",2012,"Stroke",null,"CSI","Adults","RCT"]
[65,"Hastrup, L. H., et al. (2011). \"Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses.\" Scand J Public Health 39(6): 598-607.",null,"Hastrup, L. H., et al.","Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses","AIMS: This study investigates a possible added subjective burden among informal caregivers to care recipients with a mental illness or a combination of mental and somatic illnesses compared with caregivers to care recipients with a somatic illness. The study also investigates the subjective caregiver burden by caregivers' characteristics and objective burden. METHODS: The association between subjective caregiver burden and socio-demographic factors, objective burden, and health-related quality of life was analyzed in a population of 865 Dutch informal caregivers, using multiple linear regression analysis. RESULTS: Controlling for other factors in the analysis, we found that caring for a recipient with mental illness or a combination of mental and somatic illness was associated with an extra subjective caregiver burden (measured by Caregiver Strain Index). Objective burden, in terms of more than 50 hours of care provision per week, less than three years of caregiving, or living together with the care recipients was associated with higher subjective caregiver burden. Other factors associated with higher subjective caregiver burden were being partners or a child of care recipient, having a paid job, a low health-related quality of life (EQ-5D), or having an illness. CONCLUSIONS: This study suggests that caregivers to care recipients with a mental and especially a combination of mental and somatic illnesses have a higher subjective caregiver burden compared with caregivers to care recipients with a somatic illness. Because the study is not representative of all caregivers, more research focusing on identifying and contacting informal caregivers is needed to confirm the result."," Scand J Public Health 39(6): 598-607.","Netherlands",2011,"Psychiatric",null,"CSI","Children and Adolescents","Observational"]
[66,"Hoefman, R. J., et al. (2011). \"Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care.\" Aging Ment Health 15(8): 1018-1027.",null,"Hoefman, R. J., et al.","Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care","OBJECTIVES: This study analyses feasibility, construct validity and test-retest reliability of the Care-related Quality of Life (CarerQol)-instrument among informal caregivers of long-term care (LTC) users. The CarerQol measures the impact of informal care by assessing happiness (CarerQol-VAS) and describing burden dimensions (CarerQol-7D). METHODS: Data was gathered among informal caregivers of patients obtaining day care or living in a LTC facility in the Netherlands with two questionnaires sent with a two-week interval (n test = 108, n retest = 100). Percentages of missing values indicated feasibility of the CarerQol. Construct validity assessed the extent to which differences in background characteristics were reflected in happiness scores (CarerQol-VAS) with univariate and multivariate statistics. Additionally, construct validity was tested with assessing the correlation between the CarerQol and the Self-Rated Burden (SRB) scale. Percentages of complete agreement between CarerQol scores at test and retest, Cohen's kappa coefficients (kappa value) and Intraclass Correlation Coefficients (ICCs) were used to assess reliability. RESULTS: In this study, 3.7% was missing on the CarerQol. CarerQol-VAS was positively associated with caregivers' age and health, and negatively with SRB score. The percentage of complete agreement of CarerQol-VAS between the measure moments was 60% and between 76% and 96% for CarerQol-7D. kappa value and ICC of CarerQol-VAS were 0.52 and 0.86, and ranged between 0.55 and 0.94 for CarerQol-7D. CONCLUSION: The CarerQol measures the impact of informal care among carers of LTC users in a feasible, valid and reliable way."," Aging Ment Health 15(8): 1018-1027.","Netherlands",2011,"Unspecified",null,"CarerQol","Older Persons","Validation"]
[67,"Hoefman, R. J., et al. (2017). \"Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US.\" Pharmacoeconomics 35(4): 469-478.",null,"Hoefman, R. J., et al.","Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US","BACKGROUND: Informal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which measures the impact of informal care on seven important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The CarerQol can be included at the effect side of multi-criteria analyses of patient interventions or in cost-effectiveness or utility analysis of interventions targeted at caregivers. OBJECTIVE: At present, utility scores based on relative utility weights for the CarerQol-7D are only available for the Netherlands. This study calculates CarerQol-7D tariffs for Australia, Germany, Sweden, UK, and US. METHODS: Data were collected among the general population in Australia, Germany, Sweden, UK, and US by an Internet survey. Utility weights were collected with a discrete choice experiment with two unlabeled alternatives described in terms of the seven CarerQol-7D dimensions. An efficient experimental design with priors obtained from the Netherlands was used to create the choice sets. Data was analyzed with a panel mixed multinomial logit model with random parameters. RESULTS: In all five countries, the CarerQol-7D dimensions were significantly associated with the utility of informal care situations. Physical health problems were most strongly associated with the utility for informal care situations. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions for each country separately. CONCLUSION: The CarerQol tariffs for Australia, Germany, Sweden, UK, and US facilitate the inclusion of informal care in economic evaluations."," Pharmacoeconomics 35(4): 469-478.","Australia,Germany,Sweden,UK,USA",2017,"Unspecified",null,"CarerQol","Unspecified","Validation"]
[68,"Hoefman, R., et al. (2015). \"Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations.\" Qual Life Res 24(5): 1255-1273.",null,"Hoefman, R., et al.","Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations","PURPOSE: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care. METHODS: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied. RESULTS: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers' and care recipients' health status and duration of caregiving were negatively associated with caring experiences. CONCLUSIONS: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving."," Qual Life Res 24(5): 1255-1273.","Australia",2015,"End of life",null,"CSI,CExS,CarerQol","Unspecified","Validation"]
[69,"Hoffmann, T., et al. (2010). \"Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?\" Top Stroke Rehabil 17(2): 119-127.",null,"Hoffmann, T., et al.","Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?","PURPOSE: Telephone interviews may be a cost-effective alternative to administering stroke outcome measures for people who are living in the community following a stroke, but there is a lack of research that has compared the different modes of administering outcome measures. The aim of this study was to determine whether telephone administration of selected stroke outcome measures resulted in significantly different results to face-to-face administration of the same outcome measures. METHOD: Nineteen participants who were taking part in a randomised controlled trial (RCT) evaluating the effectiveness of a postdischarge education and support package for stroke patients and their carers were recruited for this study. Participants had the RCT follow-up outcome measures, at 3 months post discharge, administered by both telephone and face-to-face. Participants were randomised to receive either the telephone or face-to-face administration first and a period of 2 weeks separated the two administrations. Outcome measures were the Knowledge of Stroke Questionnaire, a stroke self-efficacy questionnaire, Hospital Anxiety and Depression Scale, Stroke and Aphasia Quality of Life Scale, and the Caregiver Strain Index. RESULTS: There were no significant differences between scores obtained on any of the outcome measures that were administered by telephone and face-to-face (P > .05). CONCLUSION: The telephone can be used to administer the outcome measures that were evaluated in this study to stroke patients and carers. These findings may be of benefit to stroke researchers and clinicians who wish to incorporate the use of telephone measures into the follow-up care of stroke patients and their carers."," Top Stroke Rehabil 17(2): 119-127.","Australia",2010,"Stroke",null,"CSI","Adults","RCT"]
[70,"Hummel, J., et al. (2017). \"AIDE-Acute Illness and Depression in Elderly Patients. Cognitive Behavioral Group Psychotherapy in Geriatric Patients With Comorbid Depression: A Randomized, Controlled Trial.\" J Am Med Dir Assoc 18(4): 341-349.",null,"Hummel, J., et al.","AIDE-Acute Illness and Depression in Elderly Patients. Cognitive Behavioral Group Psychotherapy in Geriatric Patients With Comorbid Depression: A Randomized, Controlled Trial","BACKGROUND: Comorbid depression is highly prevalent in geriatric patients and associated with functional loss, frequent hospital re-admissions, and a higher mortality rate. Cognitive behavioral psychotherapy (CBT) has shown to be effective in older depressive patients living in the community. To date, CBT has not been applied to older patients with acute physical illness and comorbid depression. OBJECTIVES: To evaluate the effectiveness of CBT in depressed geriatric patients, hospitalized for acute somatic illness. DESIGN: Randomized controlled trial with waiting list control group. SETTING: Postdischarge intervention in a geriatric day clinic; follow-up evaluations at the patients' homes. PARTICIPANTS: A total of 155 randomized patients, hospitalized for acute somatic illness, aged 82 +/- 6 years and suffering from depression [Hospital Anxiety and Depression Scale (HADS) scores >7]. Exclusion criteria were dementia, delirium, and terminal state of medical illness. INTERVENTION: Fifteen, weekly group sessions based on a CBT manual. Commencement of psychotherapy immediately after discharge in the intervention group and a 4-month waiting list interval with usual care in the control group. MEASUREMENTS: HADS depression total score after 4 months. Secondary endpoints were functional, cognitive, psychosocial and physical status, resource utilization, caregiver burden, and amount of contact with physician. RESULTS: The intervention group improved significantly in depression scores (HADS baseline 18.8; after 4 months 11.4), whereas the control group deteriorated (HADS baseline 18.1; after 4 months 21.6). Significant improvement in the intervention group, but not in the control group, was observed for most secondary outcome parameters such as the Barthel and Karnofsky indexes. Intervention effects were less pronounced in patients with cognitive impairment or acute fractures. CONCLUSIONS: CBT is feasible and highly effective in geriatric patients. The benefits extend beyond effective recovery and include improvement in physical and functional parameters. Early diagnosis, good access to psychotherapy, and early intervention could improve care for depressive older patients. CLINICAL TRIAL REGISTRATION: www.germanctr.de German Trial Register DRKS 00004728."," J Am Med Dir Assoc 18(4): 341-349.","Germany",2017,"Psychiatric",null,"Unclear","Older Persons","RCT"]
[71,"Iecovich, E. (2012). \"Psychometric properties of the Hebrew version of the Zarit Caregiver Burden Scale short version.\" Aging Ment Health 16(2): 254-263.",null,"Iecovich, E.","Psychometric properties of the Hebrew version of the Zarit Caregiver Burden Scale short version","OBJECTIVES: The purpose of this study was to evaluate the reliability and validity of the Hebrew version of the Zarit Burden Interview (H-ZBI) short version. METHOD: Cross-sectional research methodology was used to measure the caregiver burden felt by informal family caregivers of cognitively intact but physically frail older family members. Data of this study were drawn from two convenience samples that included altogether 456 dyads of family caregivers and care recipients in Israel. Caregivers included adult children, spouses, and other relatives of the care recipients. RESULTS: The H-ZBI short version demonstrated good psychometric properties similar to those of the English version. Internal consistency of Cronbach's alpha was high (alpha = 0.85) and the measure showed good convergent and exploratory validity due to significant correlations with Caregiving Burden Scale, caregivers' quality of life (World Health Organization Quality of Life, WHOQOL-Brief), perceived health and economic statuses, as well as with health and functional statuses of care recipients. Factor analysis showed two loading factors. CONCLUSIONS: The scale can be a useful screening instrument for professionals working with family caregivers to assess the degree of burden felt by family caregivers who provide long-term care for physically frail older adults. The scale also provides indications of the need for professional intervention when burden is great and negatively affects the caregivers' quality of life."," Aging Ment Health 16(2): 254-263.","Israel",2012,"Frailty",null,"Zarit,CBI","Older Persons","Validation"]
[72,"Ivers, R. Q., et al. (2015). \"Understanding burn injuries in Aboriginal and Torres Strait Islander children: protocol for a prospective cohort study.\" BMJ Open 5(10): e009826.",null,"Ivers, R. Q., et al.","Understanding burn injuries in Aboriginal and Torres Strait Islander children: protocol for a prospective cohort study","INTRODUCTION: Although Aboriginal and Torres Strait Islander children in Australia have higher risk of burns compared with non-Aboriginal children, their access to burn care, particularly postdischarge care, is poorly understood, including the impact of care on functional outcomes. The objective of this study is to describe the burden of burns, access to care and functional outcomes in Aboriginal and Torres Strait Islander children in Australia, and develop appropriate models of care. METHODS AND ANALYSIS: All Aboriginal and Torres Strait Islander children aged under 16 years of age (and their families) presenting with a burn to a tertiary paediatric burn unit in 4 Australian States (New South Wales (NSW), Queensland, Northern Territory (NT), South Australia (SA)) will be invited to participate. Participants and carers will complete a baseline questionnaire; follow-ups will be completed at 3, 6, 12 and 24 months. Data collected will include sociodemographic information; out of pocket costs; functional outcome; and measures of pain, itch and scarring. Health-related quality of life will be measured using the PedsQL, and impact of injury using the family impact scale. Clinical data and treatment will also be recorded. Around 225 participants will be recruited allowing complete data on around 130 children. Qualitative data collected by in-depth interviews with families, healthcare providers and policymakers will explore the impact of burn injury and outcomes on family life, needs of patients and barriers to healthcare; interviews with families will be conducted by experienced Aboriginal research staff using Indigenous methodologies. Health systems mapping will describe the provision of care. ETHICS AND DISSEMINATION: The study has been approved by ethics committees in NSW, SA, NT and Queensland. Study results will be distributed to community members by study newsletters, meetings and via the website; to policymakers and clinicians via policy fora, presentations and publication in peer-reviewed journals."," BMJ Open 5(10): e009826.","Australia",2015,"Various",null,"PedsQL-FIM","Children and Adolescents","Protocol"]
[73,"Jenkinson, C., et al. (2000). \"The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe.\" J Neurol 247(11): 835-840.",null,"Jenkinson, C., et al.","The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe","The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assessment of health and the evaluation of treatment regimes. The past decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialties. However, the use of such measures in neurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motor neurone diseases in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments are also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measures are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functional Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease. The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as an association between the emotional health status of patients and carers, and between the physical health status of patients and carers."," J Neurol 247(11): 835-840.","Europe",2000,"ALS",null,"CSI","Unspecified","Observational"]
[74,"Jorge, B. M., et al. (2015). \"Cultural Adaptation Quality of Family Life Scale for the Brazilian Portuguese.\" Codas 27(6): 534-540.",null,"Jorge, B. M., et al.","Cultural Adaptation Quality of Family Life Scale for the Brazilian Portuguese","PURPOSE: To culturally adapt the Family Quality of Life Scale to the Brazilian Portuguese version and evaluate the instrument reliability and family quality of life of those who have children with hearing loss. METHODS: The process of cultural adaptation of the scale followed the steps of the Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measure. It was conducted in three stages: translation, back translation, and application in a pilot sample, as a way to check the comprehension difficulties of the items. After it had been completed, it was administered to 41 families who have children with hearing loss and, with their results, the quality of life and reliability were analyzed based on the Cronbach's alpha statistical test. RESULTS: In the first version (translation), among the 25 items, there were differences between the translators only in four items; after the corrections, the second version was done (back translation), in which other four more differences were found. Finally, after the final corrections, the last version was developed and used in the pilot sample without differences. Thus, it was applied to families with deaf children, who believe to be satisfied as to their quality of life. The Cronbach's alpha test found that the scale shows a satisfactory reliability. CONCLUSION: The Brazilian Portuguese version of the Family Quality of Life Scale is a tool of easy use and satisfactory reliability. The families are satisfied with their family quality of life."," Codas 27(6): 534-540.","Brazil",2015,"Sensory",null,"FQLS","Children and Adolescents","Validation"]
[75,"Kelly, D. H., et al. (2012). \"Health-related quality of life and strain in caregivers of Australians with Parkinson's disease: an observational study.\" BMC Neurol 12: 57.",null,"Kelly, D. H., et al.","Health-related quality of life and strain in caregivers of Australians with Parkinson's disease: an observational study","BACKGROUND: The relationship between health-related quality of life (HRQoL) in people with Parkinson's disease and their caregivers is little understood and any effects on caregiver strain remain unclear. This paper examines these relationships in an Australian sample. METHODS: Using the generic EuroQol (EQ-5D) and disease-specific Parkinson's Disease Questionnaire-39 Item (PDQ-39), HRQoL was evaluated in a sample of 97 people with PD and their caregivers. Caregiver strain was assessed using the Modified Caregiver Strain Index. Associations were evaluated between: (i) caregiver and care-recipient HRQoL; (ii) caregiver HRQoL and caregiver strain, and; (iii) between caregiver strain and care-recipient HRQoL. RESULTS: No statistically significant relationships were found between caregiver and care-recipient HRQoL, or between caregiver HRQoL and caregiver strain. Although this Australian sample of caregivers experienced relatively good HRQoL and moderately low strain, a significant correlation was found between HRQoL of people with PD and caregiver strain (rho 0.43, p < .001). CONCLUSION: Poor HRQoL in people with PD is associated with higher strain in caregivers. Therapy interventions may target problems reported as most troublesome by people with PD, with potential to reduce strain on the caregiver."," BMC Neurol 12: 57.","Australia",2012,"Parkinson's",null,"CSI","Adults","Observational"]
[76,"Khan, M. S., et al. (2003). \"Background severity of asthma in children discharged from the emergency department.\" J Paediatr Child Health 39(6): 432-435.",null,"Khan, M. S., et al.","Background severity of asthma in children discharged from the emergency department","OBJECTIVE: Attendance at an Emergency Department (ED) with an acute attack of asthma may be indicative of undertreatment of persistent disease. However, many presentations are in children with infrequent episodic asthma. The aim of this study was to characterize the pattern of asthma of children discharged from ED to determine whether there was potential to improve underlying disease control. METHODOLOGY: This was a cohort study. Three hundred and ten parental caretakers of 1 to 15-year-old children, attended and discharged from an ED with asthma, completed an asthma control questionnaire, an asthma knowledge questionnaire and a caregiver's quality of life questionnaire. Background severity of asthma was classified and medication history was assessed. Also included were those with their first attack of asthma. RESULTS: One hundred and thirty-two (43%) children had infrequent episodic asthma, 105 (34%) frequent episodic, 40 (13%) persistent asthma and 33 (11%) first attack asthma. Thirty-nine per cent of children were not receiving preventer therapy and this seemed appropriate; 14% of children with frequent episodic and persistent asthma were not receiving appropriate preventer therapy; and a further 34% had frequent symptoms despite receiving preventer therapy. CONCLUSIONS: We observed deficiencies in use of preventer medications, use of written asthma management plans and lack of parental knowledge in some children with established asthma who presented to an ED. There was also a large number of children who did not have frequent background symptoms or who presented with their first episode."," J Paediatr Child Health 39(6): 432-435.","Australia",2003,"Respiratory",null,"Unclear","Children and Adolescents","Observational"]
[77,"Koh, G. C., et al. (2015). \"Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial: protocol of a randomized clinical trial on tele-rehabilitation for stroke patients.\" BMC Neurol 15: 161.",null,"Koh, G. C., et al.","Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial: protocol of a randomized clinical trial on tele-rehabilitation for stroke patients","BACKGROUND: Most acute stroke patients with disabilities do not receive recommended rehabilitation following discharge to the community. Functional and social barriers are common reasons for non-adherence to post-discharge rehabilitation. Home rehabilitation is an alternative to centre-based rehabilitation but is costlier. Tele-rehabilitation is a possible solution, allowing for remote supervision of rehabilitation and eliminating access barriers. The objective of the Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial is to determine if a novel tele-rehabilitation intervention for the first three months after stroke admission improves functional recovery compared to usual care. METHODS/DESIGN: This is a single blind (evaluator blinded), parallel, two-arm randomised controlled trial study design involving 100 recent stroke patients. The inclusion criteria are age >/=40 years, having caregiver support and recent stroke defined as stroke diagnosis within 4 weeks. Consenting participants will be randomized with varying block size of 4 or 6 assuming a 1:1 treatment allocation with the participating centre as the stratification factor. The baseline assessment will be done within 4 weeks of stroke onset, followed by follow-up assessments at 3 and 6 months. The tele-rehabilitation intervention lasts for 3 months and includes exercise 5-days-a-week using an iPad-based system that allows recording of daily exercise with video and sensor data and weekly video-conferencing with tele-therapists after data review. Those allocated to the control group will receive usual care. The primary outcome measure is improvement in life task's social activity participation at three months as measured by the disability component of the Jette Late Life Functional and Disability Instrument (LLFDI). Secondary outcome variables consist of gait speed (Timed 5-Meter Walk Test) and endurance (Two-Minute Walk test), performance of basic activities of daily living (Shah-modified Barthel Index), balance confidence (Activities-Specific Balance Confidence Scale), patient self-reported health-related quality-of-life [Euro-QOL (EQ-5D)], health service utilization (Singapore Stroke Study Health Service Utilization Form) and caregiver reported stress (Zarit Caregiver Burden Inventory). DISCUSSION: The goal of this trial is to provide evidence on the potential benefit and cost-effectiveness of this novel tele-rehabilitation programme which will guide health care decision-making and potentially improve performance of post-stroke community-based rehabilitation. TRIAL REGISTRATION: This trial protocol was registered under ClinicalTrials.gov on 18 July 2013 as study title \"The Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) Study\" (ID: The STARS Study, ClinicalTrials.gov Identifier: NCT01905917 )."," BMC Neurol 15: 161.","Singapore",2015,"Stroke",null,"Zarit","Adults","Protocol"]
[78,"Kolakowsky-Hayner, S. A., et al. (2001). \"Long-term life quality and family needs after traumatic brain injury.\" J Head Trauma Rehabil 16(4): 374-385.",null,"Kolakowsky-Hayner, S. A., et al.","Long-term life quality and family needs after traumatic brain injury","OBJECTIVES: This investigation assessed the life quality and long-term family needs of caregivers of persons with brain injury. DESIGN: Respondents completed the Virginia Traumatic Brain Injury Family Needs Assessment Survey. SETTING: Community-based sample. PARTICIPANTS: Respondents included 57 caregivers of persons with traumatic brain injury who were at least 4 years after injury and who resided in Virginia. Respondents ranged in age from 19 to 82 years and were primarily women and Caucasian. OUTCOME MEASURES: The Family Needs Questionnaire (FNQ) and quality of life questions. RESULTS: Results indicate diminished life quality after injury. With regard to family needs, Health Information (51.43%) and Involvement with Care (47.93%) needs were most often rated as met. Instrumental Support (31.52%) and Professional Support (28.38%) needs were most often rated as not met. CONCLUSIONS: Family needs and support systems for those needs change over time. This investigation provides evidence that unmet family needs extend well beyond the acute setting and that caregiver life quality diminishes over time. The importance of appreciating long-term family needs and other life quality issues should not be underestimated."," J Head Trauma Rehabil 16(4): 374-385.","USA",2001,"Neurology",null,"FNQ","Unspecified","Observational"]
[79,"Kreutzer, J. S., et al. (2009). \"Caregivers' concerns about judgment and safety of patients with brain injury: a preliminary investigation.\" Pm r 1(8): 723-728.",null,"Kreutzer, J. S., et al.","Caregivers' concerns about judgment and safety of patients with brain injury: a preliminary investigation","OBJECTIVE: To identify caregivers' most common concerns about the judgment and safety of patients with brain injury in home and community environments. To quantify caregivers' stress levels and their level of comfort leaving patients at home unsupervised and examine the interrelationships between caregivers' safety and judgment ratings, stress levels, and levels of comfort leaving patients unattended. DESIGN: Retrospective, cross-sectional design. SETTING: Outpatient brain injury neuropsychology clinic at a university medical center. PARTICIPANTS: A convenience sample of 121 caregivers of traumatic brain injury survivors at least 1 month postinjury and 18 years of age or older. MAIN OUTCOME MEASUREMENTS: Scores in 9 domains from the Judgment and Safety Screening Inventory; ratings of stress levels and levels of comfort leaving patients at home unattended derived from the General Health and History Questionnaire. RESULTS: Caregivers' most common judgment and safety-related concerns were in the Travel and Financial domains, with many reflecting patients' memory deficits. Heightened caregiver stress levels were prevalent. Higher levels of concern about judgment and safety were associated with higher stress levels and concerns about leaving patients unattended. CONCLUSIONS: Consistent with research on patients with other types of neurological disorders, concerns about driving and financial management among caregivers are prevalent. Additional research is needed to identify the most cost-effective methods of evaluating patients and enabling them to function at their highest level in the community."," Pm r 1(8): 723-728.","USA",2009,"Neurology",null,"GHHQ","Adults","Observational"]
[80,"Landfeldt, E., et al. (2016). \"Quantifying the burden of caregiving in Duchenne muscular dystrophy.\" J Neurol 263(5): 906-915.",null,"Landfeldt, E., et al.","Quantifying the burden of caregiving in Duchenne muscular dystrophy","Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers' rating of patients' health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82-0.88) and 0.77 (0.74-0.80) across ambulatory classes and 0.88 (0.85-0.90) and 0.57 (0.39-0.74) across caregivers' rating of patients' health and mental status. Mean VAS score was 0.74 (0.73-0.75), mean SF-12 Mental Health Component Summary score 44 (43-45), and mean ZBI score 29 (28-30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients' health and mental status, was significantly associated with annual household cost burden (>$5000 vs. <$1000, odds ratio 1.76, 95 % CI 1.18-2.63) and hours of leisure time devoted to informal care per week (25-50 vs. <25 h 2.01, 1.37-2.94; >50 vs. <25 h 3.35, 2.32-4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease."," J Neurol 263(5): 906-915.","Sweden,UK",2016,"Neurology",null,"Zarit","Children and Adolescents","Observational"]
[81,"Lang, P. O., et al. (2010). \"Early markers of prolonged hospital stay in demented inpatients: a multicentre and prospective study.\" J Nutr Health Aging 14(2): 141-147.",null,"Lang, P. O., et al.","Early markers of prolonged hospital stay in demented inpatients: a multicentre and prospective study","BACKGROUND: Dementia is a serious, chronic, and costly public health problem. Prior studies have described dementia as increasing length of hospital stay, but so far no explanations have been proposed. METHODS: To identify early markers for prolonged hospital stay in demented elderly inpatients, 178 community-dwelling or institutionalized subjects aged 75+, hospitalized through an emergency department in 9 teaching hospitals in France, were analyzed. Prolonged hospital stays were defined according a limit adjusted for Diagnosis Related Group. All patients underwent a comprehensive geriatric assessment at admission. Logistic regression multifactorial mixed model was performed. Center effect was considered as a random effect. RESULTS: Of the 178 stays, 52 were prolonged. Most concerned community-dwelling patients (86%). Multifactor analysis demonstrated that demographic variables had no influence on the length of stay, while diagnosis of delirium (OR 2.31; 95% CI 1.77 - 2.91), walking difficulties (OR 1.94; 95% CI 1.62 - 2.43) and report by the informal caregiver of moderate or severe burden (OR 1.52; 95% CI 1.19 - 1.86) or low social quality-of-life score (OR 1.25; 95% CI 1.03 - 1.40), according to the Zarit's Burden Inventory short scale (12 items) and the Duke's Health Profile respectively, were identified as early markers for prolonged hospital stays. CONCLUSION: At the time of the rising incidence of cognitive disorders, these results suggest that preventive approaches might be possible. In a hospital setting as well as in a community-dwelling population, more specific, specialized and coordinated care, using the expertise of multiple disciplines appears as a probable effective measure to limit prolonged hospital stay. Such approaches require (i) clear patient-oriented goal definition, (ii) understanding and appreciation of roles among various health care and social disciplines and, (iii) cooperation between partners in patient's management. However, the cost- and health-effectiveness of such approaches should be evaluated."," J Nutr Health Aging 14(2): 141-147.","Switzerland",2010,"Dementia",null,"Zarit","Older Persons","Observational"]
[82,"Lebrec, J., et al. (2016). \"Effect of diabetes on caregiver burden in an observational study of individuals with Alzheimer's disease.\" BMC Geriatr 16: 93.",null,"Lebrec, J., et al.","Effect of diabetes on caregiver burden in an observational study of individuals with Alzheimer's disease","BACKGROUND: The burden on caregivers of patients with Alzheimer's disease (AD) is associated with the patient's functional status and may also be influenced by chronic comorbid medical conditions, such as diabetes. This post-hoc exploratory analysis assessed whether comorbid diabetes in patients with AD affects caregiver burden, and whether caregivers with diabetes experience greater burden than caregivers without diabetes. Caregiver and patient healthcare resource use (HCRU) were also assessed. METHODS: Baseline data from the GERAS observational study of patients with AD and their caregivers (both n = 1495) in France, Germany and the UK were analyzed. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Caregiver time on activities of daily living (ADL: basic ADL; instrumental ADL, iADL) and supervision (hours/month), and caregiver and patient HCRU (outpatient visits, emergency room visits, nights hospitalized) were assessed using the Resource Utilization in Dementia instrument for the month before the baseline visit. Regression analyses were adjusted for relevant covariates. Time on supervision and basic ADL was analyzed using zero-inflated negative binomial regression. RESULTS: Caregivers of patients with diabetes (n = 188) were younger and more likely to be female (both p < 0.05), compared with caregivers of patients without diabetes (n = 1307). Analyses showed caregivers of patients with diabetes spent significantly more time on iADL (+16 %; p = 0.03; increases were also observed for basic ADL and total caregiver time but did not reach statistical significance) and had a trend towards increased ZBI score. Patients with diabetes had a 63 % increase in the odds of requiring supervision versus those without diabetes (p = 0.01). Caregiver and patient HCRU did not differ according to patient diabetes. Caregivers with diabetes (n = 127) did not differ from those without diabetes (n = 1367) regarding burden/time, but caregivers with diabetes had a 91 % increase in the odds of having outpatient visits (p = 0.01). CONCLUSIONS: This cross-sectional analysis found caregiver time on iADL and supervision was higher for caregivers of patients with AD and diabetes versus without diabetes, while HCRU was unaffected by patient diabetes. Longitudinal analyses assessing change in caregiver burden over time by patient diabetes status may help clarify the cumulative impact of diabetes and AD dementia on caregiver burden."," BMC Geriatr 16: 93.","Germany,USA",2016,"Dementia,Diabetes",null,"Zarit","Older Persons","Observational"]
[83,"Leidy, N. K. and A. Knebel (2010). \"In search of parsimony: reliability and validity of the Functional Performance Inventory-Short Form.\" Int J Chron Obstruct Pulmon Dis 5: 415-423.",null,"Leidy, N. K. and A. Knebel","In search of parsimony: reliability and validity of the Functional Performance Inventory-Short Form","PURPOSE: the 65-item Functional Performance Inventory (FPI), developed to quantify functional performance in patients with chronic obstructive pulmonary disease (COPD), has been shown to be reliable and valid. The purpose of this study was to create a shorter version of the FPI while preserving the integrity and psychometric properties of the original. PATIENTS AND METHODS: secondary analyses were performed on qualitative and quantitative data used to develop and validate the FPI long form. Seventeen men and women with COPD participated in the qualitative work, while 154 took part in the mail survey; 54 completed 2-week reproducibility assessment, and 40 relatives contributed validation data. Following a systematic process of item reduction, performance properties of the 32-item short form (FPI-SF) were examined. RESULTS: the FPI-SF was internally consistent (total scale alpha = 0.93; subscales: 0.76-0.89) and reproducible (r = 0.88; subscales: 0.69-0.86). Validity was maintained, with significant (P < 0.001) correlations between the FPI-SF and the Functional Status Questionnaire (activities of daily living, r = 0.71; instrumental activities of daily living, r = 0.73), Duke Activity Status Index (r = 0.65), Bronchitis-Emphysema Symptom Checklist (r = -0.61), Basic Need Satisfaction Inventory (r = 0.61) and Cantril's Ladder of Life Satisfaction (r = 0.63), and Katz Adjustment Scale for Relatives (socially expected activities, r = 0.51; free-time activities, r = -0.49, P < 0.01). The FPI-SF differentiated patients with an FEV(l)% predicted greater than and less than 50% (t = 4.26, P < 0.001), and those with severe and moderate levels of perceived severity and activity limitation (t = 9.91, P < 0.001). CONCLUSION: results suggest the FPI-SF is a viable alternative to the FPI for situations in which a shorter instrument is desired. Further assessment of the instrument's performance properties in new samples of patients with COPD is warranted."," Int J Chron Obstruct Pulmon Dis 5: 415-423.","USA",2010,"Respiratory",null,"Katz","Unspecified","Validation"]
[84,"Leroi, I., et al. (2014). \"Memantine improves goal attainment and reduces caregiver burden in Parkinson's disease with dementia.\" Int J Geriatr Psychiatry 29(9): 899-905.",null,"Leroi, I., et al.","Memantine improves goal attainment and reduces caregiver burden in Parkinson's disease with dementia","OBJECTIVE: Memantine, an uncompetitive antagonist of N-methyl-d-aspartate receptors, may have a role in managing symptoms associated with dementia in Parkinson's disease (PDD), although its role in improving patient-reported outcomes (PROs) has not been extensively investigated. PROs may be more sensitive than standard psychometric measures for detecting change in complex conditions such as PDD. The aim of this study was to examine the effect of memantine on PROs: individually determined goals and health-related quality of life. We also examined memantine's effect on caregiver burden. METHODS: This 22-week double-blind randomised controlled trial evaluated participants with PDD on 20 mg of memantine or placebo. Outcome measures were Goal Attainment Scaling (GAS), the Parkinson's Disease Questionnaire-8 and the Zarit Burden Inventory. RESULTS: A significantly greater proportion of participants on memantine (64%) had better than expected GAS outcomes compared with those on placebo (7%) (p = 0.007). Furthermore, the improvement in mean GAS score, as well as mean caregiver burden score, from baseline to drug discontinuation was significantly greater in those on memantine compared with those on placebo (p = 0.03 and 0.04, respectively). Significant differences in quality of life were not seen. CONCLUSIONS: In this study, memantine improved individually set goals and caregiver burden in PDD. This suggests that clinimetric measures such as GAS may be more sensitive than conventional psychometric measures in detecting improvements in people with PDD."," Int J Geriatr Psychiatry 29(9): 899-905.","UK",2014,"Parkinson's,Dementia",null,"Zarit","Older Persons","RCT"]
[85,"Lilja, G., et al. (2013). \"Cognitive function after cardiac arrest and temperature management; rationale and description of a sub-study in the Target Temperature Management trial.\" BMC Cardiovasc Disord 13: 85.",null,"Lilja, G., et al.","Cognitive function after cardiac arrest and temperature management; rationale and description of a sub-study in the Target Temperature Management trial","BACKGROUND: Mild to moderate cognitive impairment is common amongst long-term survivors of cardiac arrest. In the Target Temperature Management trial (TTM-trial) comatose survivors were randomized to 33 degrees C or 36 degrees C temperature control for 24 hours after cardiac arrest and the effects on survival and neurological outcome assessed. This protocol describes a sub-study of the TTM-trial investigating cognitive dysfunction and its consequences for patients' and relatives' daily life. METHODS/DESIGN: Sub-study sites in five European countries included surviving TTM patients 180 days after cardiac arrest. In addition to the instruments for neurological function used in the main trial, sub-study patients were specifically tested for difficulties with memory (Rivermead Behavioural Memory Test), attention (Symbol Digit Modalities Test) and executive function (Frontal Assessment Battery). Cognitive impairments will be related to the patients' degree of participation in society (Mayo-Portland Adaptability Inventory-4), health related quality of life (Short Form Questionnaire-36v2(c)), and the caregivers' situation (Zarit Burden Interview(c)). The two intervention groups (33 degrees C and 36 degrees C) will be compared with a group of myocardial infarction controls. DISCUSSION: This large international sub-study of a randomized controlled trial will focus on mild to moderate cognitive impairment and its consequences for cardiac arrest survivors and their caregivers. By using an additional battery of tests we may be able to detect more subtle differences in cognitive function between the two intervention groups than identified in the main study. The results of the study could be used to develop a relevant screening model for cognitive dysfunction after cardiac arrest. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01946932."," BMC Cardiovasc Disord 13: 85.","Europe",2013,"Cardiac",null,"Zarit","Adults","Protocol"]
[86,"Lin, L. N. and S. C. Wu (2014). \"Measurement structure of the caregiver burden scale: findings from a national community survey in Taiwan.\" Geriatr Gerontol Int 14(1): 176-184.",null,"Lin, L. N. and S. C. Wu","Measurement structure of the caregiver burden scale: findings from a national community survey in Taiwan","AIM: There is no appropriate understanding of community family caregiver burden. The object of the present study was to evaluate the measurement structure of a caregiver burden scale from a nationally representative Taiwanese community sample. METHODS: Data from nationally representative subjects completing face-to-face interviews on caregiver burden were analyzed. A total of 9020 primary adult family caregivers were enrolled. All of the valid respondents were equally divided into three subsamples. The first sample was used to explore the factor structure of burden scale. The second sample was used to validate the factor structure. The third sample was used to verify the adequacy and stability of the factor structures developed in the former steps. RESULTS: A total of 8826 valid data were included for analysis. Exploratory and confirmatory factor analysis identified the four-factor, 15-item Caregiver Burden Scale (CBS-15) in the present study. The extracted four factors were predominantly accounted for by the items measuring \"burden of time,\" \"relational burden,\" \"financial burden\" and \"emotional burden\". All the goodness-of-fit indices reported for this model were acceptable. CONCLUSION: The present study supports the usefulness of the CBS-15 as a tool to understand the measurement structure of burden in a nationally representative Taiwanese community family caregivers sample. The CBS-15 can be used to identify community caregiver needs."," Geriatr Gerontol Int 14(1): 176-184.","Taiwan",2014,"Unspecified",null,"CBS","Adults","Validation"]
[87,"Lin, L. P., et al. (2015). \"Comparison of job burnout and life satisfaction between native and foreign female direct care workers in disability institutions.\" Work 52(4): 803-809.",null,"Lin, L. P., et al.","Comparison of job burnout and life satisfaction between native and foreign female direct care workers in disability institutions","BACKGROUND: There is little information about the burnout and wellbeing of institutional caregivers working for people with intellectual and developmental disabilities; information is particularly limited in the understanding of experiences of direct care workers. OBJECTIVE: The aims of the study were to provide a profile of self-perceived burnout and wellbeing of direct-care caregivers working in disability institutions, and to compare the difference between native- and foreign caregivers. METHODS: A cross-sectional survey was conducted. We recruited 46 female living assistants of people with intellectual and developmental disabilities in two disability institutions in Taiwan. There were 23 subjects who were local residents and 23 subjects who were foreign providers of labor. A self-administered questionnaire which included scale of the Copenhagen Burnout Inventory (CBI), the Subjective Happiness Scale (SHS), and the Satisfaction with Life Scale (SWLS) were employed in the survey. RESULTS: Findings revealed the local caregivers were slightly higher than foreign caregivers in personal burnout score (PBS) and work-related burnout score (WBS), although there were no significant differences. Those caregivers from foreign countries seem to be slightly happier and have higher life satisfaction than native caregivers. CONCLUSIONS: In order to decrease the burnout and improve wellbeing of caregivers of people with intellectual and developmental disabilities, service providers should understand the experiences which caregivers encounter in their workplaces. Caregivers can benefit if they receive appropriate support to improve positive health while working for their service clients."," Work 52(4): 803-809.","Taiwan",2015,"Developmental",null,"CopBI","Children and Adolescents","Observational"]
[88,"Lincoln, N. B., et al. (2003). \"Evaluation of a stroke family support organiser: a randomized controlled trial.\" Stroke 34(1): 116-121.",null,"Lincoln, N. B., et al.","Evaluation of a stroke family support organiser: a randomized controlled trial","BACKGROUND AND PURPOSE: There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service. METHODS: Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services. RESULTS: There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information. CONCLUSIONS: The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers."," Stroke 34(1): 116-121.","UK",2003,"Stroke",null,"CSI","Adults","RCT"]
[89,"Lincoln, N. B., et al. (2004). \"Evaluation of a multiprofessional community stroke team: a randomized controlled trial.\" Clin Rehabil 18(1): 40-47.",null,"Lincoln, N. B., et al.","Evaluation of a multiprofessional community stroke team: a randomized controlled trial","OBJECTIVES: There is inconclusive evidence of the effectiveness of stroke rehabilitation by a community stroke team. The aim was to evaluate a specialist multiprofessional team in a community setting. DESIGN: Randomized controlled trial. SETTING: Community. PARTICIPANTS: Stroke patients and their informal carers who were referred to receive rehabilitation from a community stroke team. OUTCOME MEASURES: Barthel Index, Extended Activities of Daily Living Scale (EADL), General Health Questionnaire (GHQ-12) by patient and carer, Carer Strain Index (CSI), Euroquol, knowledge of stroke and satisfaction with services six months after recruitment. RESULTS: There were no significant differences between patients who received rehabilitation from community stroke team (n = 189) and those who received routine care (n = 232) in their independence in activities of daily living, mood, quality of life or knowledge of stroke. The patients in the community stroke team group were significantly more satisfied with the emotional support they had received (p < 0.01). There were no significant differences between the groups in satisfaction with practical help or overall satisfaction. Carers of patients in the community stroke team were under significantly less strain than carers in the routine care group (p < 0.04). Carers of patients in the community stroke team group were significantly more satisfied with their knowledge of stroke (p < 0.01) and were more satisfied overall (p < 0.01). CONCLUSIONS: The patients treated by the community stroke team were more satisfied with the emotional support they received and had equivalent outcomes in terms of independence in activities of daily living and mood. Their carers were under less strain and were more satisfied with their knowledge of stroke recovery, the emotional support they received and overall satisfaction with services. The results support the provision of rehabilitation by a community-based specialist multiprofessional team."," Clin Rehabil 18(1): 40-47.","UK",2004,"Stroke",null,"CSI","Adults","RCT"]
[90,"Lincoln, N. B., et al. (2015). \"Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis: study protocol for a randomised controlled trial (CRAMMS).\" Trials 16: 556.",null,"Lincoln, N. B., et al.","Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis: study protocol for a randomised controlled trial (CRAMMS)","BACKGROUND: People with multiple sclerosis have problems with memory and attention. Cognitive rehabilitation is a structured set of therapeutic activities designed to retrain an individual's memory and other cognitive functions. Cognitive rehabilitation may be provided to teach people strategies to cope with these problems, in order to reduce the impact on everyday life. The effectiveness of cognitive rehabilitation for people with multiple sclerosis has not been established. METHODS: This is a multi-centre, randomised controlled trial investigating the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems for people with multiple sclerosis. Four hundred people with multiple sclerosis will be randomised from at least four centres. Participants will be eligible if they have memory problems, are 18 to 69 years of age, are able to travel to attend group sessions and give informed consent. Participants will be randomised in a ratio of 6:5 to the group rehabilitation intervention plus usual care or usual care alone. Intervention groups will receive 10 weekly sessions of a manualised cognitive rehabilitation programme. The intervention will include both restitution strategies to retrain impaired attention and memory functions and compensation strategies to enable participants to cope with their cognitive problems. All participants will receive a follow-up questionnaire and an assessment by a research assistant at 6 and 12 months after randomisation. The primary outcome is the Multiple Sclerosis Impact Scale (MSIS) Psychological subscale at 12 months. Secondary outcomes include the Everyday Memory Questionnaire, General Health Questionnaire-30, EQ-5D and a service use questionnaire from participants, and the Everyday Memory Questionnaire-relative version and Carer Strain Index from a relative or friend. The primary analysis will be based on intention to treat. A mixed-model regression analysis of the MSIS Psychological subscale at 12 months will be used to estimate the effect of the group cognitive rehabilitation programme. DISCUSSION: The study will provide evidence regarding the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems in people with multiple sclerosis. TRIAL REGISTRATION: ISRCTN09697576 . Registered 14 August 2014."," Trials 16: 556.","UK",2015,"Multiple Sclerosis",null,"CSI","Adults","RCT"]
[91,"Lindvall, K., et al. (2014). \"Increased burden on caregivers of having a child with haemophilia complicated by inhibitors.\" Pediatr Blood Cancer 61(4): 706-711.",null,"Lindvall, K., et al.","Increased burden on caregivers of having a child with haemophilia complicated by inhibitors","INTRODUCTION: Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children. METHODS: Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected. RESULTS: In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except 'pain' and 'general health'. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping. CONCLUSION: Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments."," Pediatr Blood Cancer 61(4): 706-711.","Sweden,UK,Canada",2014,"Genetic",null,"CBS,FIS","Children and Adolescents","Observational"]
[92,"Liu, J. F., et al. (2017). \"Burden on caregivers of ventilator-dependent patients: A cross-sectional study.\" Medicine (Baltimore) 96(27): e7396.",null,"Liu, J. F., et al.","Burden on caregivers of ventilator-dependent patients: A cross-sectional study","Caring for prolonged mechanical ventilation (PMV) patients imposes heavy psychological, physical, social, and financial burdens on caregivers. Currently, studies regarding the burden on caregivers of PMV patients are scant; therefore, the present study investigated the burden on caregivers of PMV patients.This cross-sectional study was approved by the Institutional Review Board of Zuoying Armed Forces General Hospital. A survey was conducted among the caregivers of PMV patients who were admitted to a chronic respiratory care ward (RCW) or were receiving home care from June to December 2010. The survey included basic demographic information of PMV patients and their caregivers and the Burden Assessment Scale scores for 4 domains comprising a total of 21 questions (physical burden, n = 5; psychological burden, n = 6; social burden, n = 6; financial burden, n = 4). Statistical analyses were conducted using the t test, 1-way analysis of variance with the Scheffe post hoc test, and the chi-square test, and P < .05 was considered statistically significant.A total of 160 caregivers (age, 50-53 years) were recruited (n = 80 each in the home care and RCW groups), and most of these caregivers were married women. Due to insufficient sleep, physical exhaustion, back pain, and caregiving, home caregivers had significantly higher physical burden levels than RCW caregivers (P < .01).Home caregivers experienced higher physical burden levels than RCW caregivers. Therefore, clinical and professional support must be provided to home caregivers of PMV patients."," Medicine (Baltimore) 96(27): e7396.","Taiwan",2017,"Respiratory",null,"BAS","Unspecified","Observational"]
[93,"Locker, D., et al. (2002). \"Family impact of child oral and oro-facial conditions.\" Community Dent Oral Epidemiol 30(6): 438-448.",null,"Locker, D., et al.","Family impact of child oral and oro-facial conditions","OBJECTIVES: The aim of this study was to develop and evaluate the Family Impact Scale, a measure of the family impact of child oral and oro-facial disorders. This formed one component of the Child Oral Health Quality of Life Instrument. METHODS: The scale was developed using a process described by Guyatt et al. (1987) and Juniper et al. (1996). An item pool was developed using a review of existing child health status and family impact questionnaires, interviews with 41 parents-caregivers of children with paedodontic, orthodontic and oro-facial conditions and discussions with dental specialists. The resulting pool of 21 items was used in an item impact study in which 93 parents-caregivers provided data on the frequency and importance of these items. The 14 items identified most frequently or rated the most important were selected for the final questionnaire. The discriminant and construct validity and internal consistency reliability of this 14-item scale were assessed in a study of 266 parents-caregivers from the three clinical groups. Seventy-nine of these participants completed a second copy of the questionnaire to facilitate assessment of test-retest reliability. RESULTS: Family Impact Scale scores ranged from 0 to 33, indicating that the measure was sensitive to variations in family impact. Floor effects were minimal with only 10.2% of subjects having a score of zero and there were no ceiling effects, that is, subjects with maximum scores. Almost three-quarters of parents-caregivers reported some family impact 'sometimes' or 'often/everyday' over the previous 3 months. Impact on parental or family activities of this frequency was reported by 53.0%, impact on parental emotions by 44.0%, conflict in the family by 31.6% and financial difficulties by 31.2%. The measure and its component items were reasonably good at discriminating between the three clinical groups included in the study and showed good construct validity. It had excellent internal consistency reliability with a Cronbach's alpha of 0.83 and was reproducible for parent-caregivers who reported that their child's condition was stable (ICC = 0.80). CONCLUSIONS: The study provides some data to suggest that child oral and oro-facial conditions have a pervasive impact on the family. The Family Impact Scale had good technical properties. Its evaluative properties need to be tested in longitudinal studies."," Community Dent Oral Epidemiol 30(6): 438-448.","Canada",2002,"Oral Health",null,"FIS","Children and Adolescents","Observational"]
[94,"Loebig, M. (1990). \"Mothers' assessments of the impact of children with spina bifida on the family.\" Matern Child Nurs J 19(3): 251-264.",null,"Loebig, M.","Mothers' assessments of the impact of children with spina bifida on the family","This exploratory, descriptive study examined mothers' assessments of the impact of children with spina bifida on the family. A review of the literature indicated that families can be conceptualized as systems and that the impact of a child with spina bifida is experienced throughout the system. The subjects were a convenience sample of ten mothers of children ages 5 to 11 with spina bifida. Three instruments were used to collect data. The Child Health History and Demographic Questionnaire; the Impact on Family Scale (Stein & Riessman, 1980); and the Parent Concern Questionnaire. The instruments were administered to subjects in fixed order. Demographic and family impact data were collected in writing. Parent concern data were collected through audiotaped interviews. Demographic data were summarized for frequencies. Impact on Family scores were tabulated and compared to the score of a reference group using a two-tailed student's t-test and a p value of p less than or equal to .05. Wilcoxon rank-sum tests were run on the Impact on Family scores to examine for differences by income, presence of siblings, child's educational setting, and marital status. Parent concern data were content analyzed for themes. Mean scores of Impact on Family dimensions were not significantly different from a reference sample of mothers of children with chronic conditions. Within the sample, positive relationships were found between financial impact and the presence of siblings, impact on social relations and both single parenthood and having a child in special education, and coping and higher incomes. Mothers' concerns included their children's social development, rehabilitation, and independence issues. Impact issues included sibling protectiveness, conflicts with grandparents over the child with spina bifida, and financial costs. Most mothers reported optimism about their child with spina bifida."," Matern Child Nurs J 19(3): 251-264.","Unknown",1990,"Neurology",null,"FIS","Children and Adolescents","Observational"]
[95,"Logiudice, D., et al. (1999). \"Do memory clinics improve the quality of life of carers? A randomized pilot trial.\" Int J Geriatr Psychiatry 14(8): 626-632.",null,"Logiudice, D., et al.","Do memory clinics improve the quality of life of carers? A randomized pilot trial","OBJECTIVE: To determine the effects of attendance at a memory clinic on the psychosocial health of carers. DESIGN: Randomized control trial. PARTICIPANTS: Fifty community dwelling subjects with mild to moderate dementia and their carers. MAIN OUTCOME MEASURES: Carer burden, psychological morbidity and psychosocial health related quality of life at 6 and 12 months post intervention. MAIN RESULTS: There was significant improvement in psychosocial health related quality of life of carers as measured by the psychosocial domain of the Functional Limitation Profile (FLP) at 6 months (p < 0.01), including improvement in the subgroups of alertness behaviour (p < 0.05) and social interaction (p < 0.01), after adjustment for age of subject and baseline scores. The improvement in social interaction was maintained at 12 months (p < 0.05). There was no significant difference in carer psychological morbidity (General Health Questionnaire), carer burden (Zarit family interview) or carer knowledge of dementia (Dementia Knowledge Test) at 6 or 12 months, between groups. CONCLUSIONS: These results demonstrate improved psychosocial health related quality of life for carers of those with mild to moderate cognitive impairment attending a memory clinic. Further research in this area is indicated, comparing memory clinic intervention with alternative support."," Int J Geriatr Psychiatry 14(8): 626-632.","Australia",1999,"Dementia",null,"Zarit","Older Persons","Observational"]
[96,"Lutomski, J. E., et al. (2015). \"Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS).\" Qual Life Res 24(5): 1281-1293.",null,"Lutomski, J. E., et al.","Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)","PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire). METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed. RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels. CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted."," Qual Life Res 24(5): 1281-1293.","Netherlands",2015,"Frailty",null,"CarerQol","Older Persons","Validation"]
[97,"Lyu, Q. Y., et al. (2015). \"Validation of Hospitalization Impact Scale among families with children hospitalized for cancer treatment.\" J Adv Nurs 71(8): 1958-1969.",null,"Lyu, Q. Y., et al.","Validation of Hospitalization Impact Scale among families with children hospitalized for cancer treatment","AIM: To make further modifications to and validate the psychometric properties of the Hospitalization Impact Scale. BACKGROUND: A child's repeated and prolonged hospitalization for cancer treatment can result in great changes for the entire family. A hospitalization-specific screening tool is needed to help clinical nurses identify families who are experiencing major impacts during their child's hospitalization. DESIGN: A cross-sectional study was employed to examine the psychometric properties of the Hospitalization Impact Scale. METHOD: The sample consisted of 253 families with children hospitalized for cancer treatment in four paediatric oncology departments in four hospitals in mainland China from September 2013 - March 2014. Parents completed the 36-item Hospitalization Impact Scale, demographic measures and the Family Impact Module of the Pediatric Quality of Life Inventory. Reliability, construct validity, known-group validity and concurrent validity were examined. RESULT: The revised Hospitalization Impact Scale included six factors containing 34 items. It demonstrated sound concurrent validity with the Family Impact Module of the Pediatric Quality of Life Inventory and excellent internal consistency. CONCLUSION: The revised Hospitalization Impact Scale met the standard psychometric criteria for reliability and validity. Thus, it could be applied in paediatric oncology departments to help nurses assess and identify families experiencing major impacts during a child's hospitalization for cancer treatment."," J Adv Nurs 71(8): 1958-1969.","China",2015,"Cancer",null,"PedsQL-FIM,HIS","Children and Adolescents","Validation"]
[98,"Macedo, E. C., et al. (2015). \"Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review.\" Rev Lat Am Enfermagem 23(4): 769-777.",null,"Macedo, E. C., et al.","Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review","OBJECTIVE: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. METHOD: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. RESULTS: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. CONCLUSION: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden."," Rev Lat Am Enfermagem 23(4): 769-777.","International",2015,"Unspecified",null,"Zarit,MB-CBS,QLIPCIC","Children and Adolescents","SLR"]
[99,"Machado, D. A., et al. (2014). \"Open-label observation of addition of etanercept versus a conventional disease-modifying antirheumatic drug in subjects with active rheumatoid arthritis despite methotrexate therapy in the Latin American region.\" J Clin Rheumatol 20(1): 25-33.",null,"Machado, D. A., et al.","Open-label observation of addition of etanercept versus a conventional disease-modifying antirheumatic drug in subjects with active rheumatoid arthritis despite methotrexate therapy in the Latin American region","BACKGROUND: Previous global studies examined etanercept (ETN) + methotrexate (MTX) for treatment of rheumatoid arthritis (RA), but included few subjects from Latin America. OBJECTIVE: The objective of this study was to compare the safety and efficacy of ETN + MTX versus a standard-of-care disease-modifying antirheumatic drug (DMARD) + MTX in Latin American subjects with moderate to severe active RA despite MTX therapy. METHODS: This open-label, active-comparator study (NCT00848354) randomized subjects 2:1 to ETN 50 mg/wk + MTX or investigator-selected DMARD (sulfasalazine or hydroxychloroquine) + MTX (ETN + MTX, n = 281; DMARD + MTX, n = 142). The primary end point was the proportion achieving American College of Rheumatology (ACR) 50 at week 24. Secondary end points included ACR20/70, disease activity score (DAS) 28 measures, and mean change in modified total Sharp score. Patient-reported outcomes were the Health Assessment Questionnaire, 36-item Short-Form, Hospital Anxiety and Depression Scale, Work Productivity and Activity Impairment: RA (WPAI:RA), and Caregiver Burden and Resource Utilization. Statistical analyses were stratified by country; chi test and analysis of covariance were used. Adverse events were monitored. RESULTS: More subjects achieved ACR50 at week 24 with ETN + MTX versus DMARD + MTX (62% vs 23%, respectively), in addition to secondary end points (P < 0.0001 for all); mean change in modified total Sharp score was lower for the ETN + MTX group (0.4 vs 1.4, respectively; P = 0.0270). Improvements in patient-reported outcomes favored ETN + MTX for Health Assessment Questionnaire, 36-item Short-Form, Hospital Anxiety and Depression Scale for depression, WPAI:RA, and Caregiver Burden and Resource Utilization emergency department visits for RA (P < 0.01). Overall, adverse events were similar between the groups (69% vs 68%,); serious adverse events were also similar (4% vs 1%). The rate of overall infections was higher with ETN + MTX (38%) than DMARD + MTX (22%, P </= 0.001). CONCLUSIONS: Consistent with published global data among RA patients with inadequate response to MTX, adding ETN to MTX demonstrated better efficacy than adding one other conventional DMARD to MTX. No new safety issues were observed. ETN + MTX provided favorable benefit-risk profile among RA patients from LA region."," J Clin Rheumatol 20(1): 25-33.","Brazil",2014,"Musculoskeletal",null,"CB-RU","Adults","Observational"]
[100,"Machnicki, G., et al. (2009). \"Validity and reliability of the SF-36 administered to caregivers of patients with alzheimer's disease: evidence from a south american sample.\" Dement Geriatr Cogn Disord 28(3): 206-212.",null,"Machnicki, G., et al.","Validity and reliability of the SF-36 administered to caregivers of patients with alzheimer's disease: evidence from a south american sample","BACKGROUND: Being a caregiver of a patient with Alzheimer's disease is associated with impaired health status and declines in health-related quality of life (HRQoL). This paper evaluates the reliability and validity of the Argentinean version of the Medical Outcomes Study Short-Form Health Survey (SF-36) among caregivers of patients with Alzheimer's disease. METHODS: Forty-eight caregivers of Alzheimer's disease patients completed the SF-36, the Zarit Burden Interview (ZBI) and the Neuropsychiatric Inventory (NPI). Patients were evaluated for dementia severity using the Clinical Dementia Rating (CDR) and for cognitive status using the Mini Mental State Examination (MMSE). RESULTS: The SF-36 scales demonstrated adequate-to-strong internal consistency (Cronbach's alpha range: 0.72 to 0.92). Correlations between the SF-36 scales and the ZBI were moderate to strong (range: -0.19 to -0.79, all p < 0.01 expect for physical function). Significant correlations between the SF-36 scales and the CDR, MMSE and NPI were lower (range: -0.30 to -0.40, p < 0.001) and strongest in mental health-related scales of the SF-36. The SF-36 demonstrated good factorial validity. CONCLUSIONS: The Argentinean translation of the SF-36 is reliable and valid for use to measure the HRQoL of caregivers of patients with Alzheimer's disease."," Dement Geriatr Cogn Disord 28(3): 206-212.","Argentina",2009,"Dementia",null,"Zarit","Older Persons","Validation"]
[101,"Majani, G., et al. (2005). \"Impact of children's respiratory allergies on caregivers.\" Monaldi Arch Chest Dis 63(4): 199-203.",null,"Majani, G., et al.","Impact of children's respiratory allergies on caregivers","BACKGROUND: Despite the great attention that has been paid to HRQoL in children with respiratory allergy, few studies have addressed this aspect in relation to caregivers. The aim of our study was to evaluate the impact of childhood respiratory allergies on caregivers by means of a new method. METHODS: 119 parents of children suffering from allergies (75 suffering from asthma and 44 suffering from rhinitis) were recruited from three Italian Allergy Units. Parents were asked to complete the Disease Impact On Caregiver (DIOC), a new non disease specific questionnaire, validated on the Italian population. The questionnaire consists of 31 items grouped in four factors (Performance, Personal gratification, Psychophysical endurance, Socio-emotional domain) and covers the life aspects that could be affected by the assistance duties towards an ill family member. RESULTS: Child's asthma resulted to have a worse impact on many aspects of a parents' life than rhinitis. Differences resulted to be statistically significant in 19 aspects out of the 31 assessed. The worse impact of asthma versus rhinitis was confirmed in the following domains: Performance (24.0 +/- 18.2 vs 11.5 +/- 17.8), Personal gratification (26.3 +/- 20.5 vs 12.1 +/- 16.5) and Psychophysical endurance (35.0 +/- 24.8 vs 18.8 +/- 21.7). In the Socio-emotional domain no difference emerged. CONCLUSIONS: Compared to parents of rhinitics, parents of asthmatic children appear to be more compromised in their resistance to stress, mood, emotional stability, amount of spare time and leisure activities. Our results suggest the need of giving the due attention to these problems both in clinical practice and in research, in order to avoid possible interferences of the caregiver's distress in the optimization of treatment outcome."," Monaldi Arch Chest Dis 63(4): 199-203.","Italy",2005,"Respiratory",null,"DIOC","Children and Adolescents","Observational"]
[102,"Malden, P. E., et al. (2008). \"Changes in parent-assessed oral health-related quality of life among young children following dental treatment under general anaesthetic.\" Community Dent Oral Epidemiol 36(2): 108-117.",null,"Malden, P. E., et al.","Changes in parent-assessed oral health-related quality of life among young children following dental treatment under general anaesthetic","OBJECTIVE: To estimate the nature and magnitude of changes in oral health-related quality of life (OHRQoL) among children having dental treatment under general anaesthetic (GA) and to examine the evaluative properties of the Child Oral Health-related Quality of Life Questionnaire (COHQOL). METHODS: Data from a consecutive clinical sample of the parents/caregivers of children receiving dental treatment under GA at Wellington and Kenepuru Hospitals were collected from parents using the Parental-Caregivers Perception Questionnaire (P-CPQ) and the Family Impact Scale (FIS), which both form part of the COHQOL Questionnaire. The first questionnaire was completed before treatment or while the participant's child was undergoing treatment. The follow-up questionnaire was completed 1-4 weeks afterward. Treatment-associated changes in OHRQoL were determined by comparing baseline and follow-up data for the mean scores and the prevalence of impacts. The discriminative properties of the instrument were confirmed and then its evaluative properties were assessed (by examining its test-retest reliability, responsiveness and longitudinal construct validity). The minimally important difference was determined for the overall scale and subscales. RESULTS: Complete baseline and follow-up data were obtained for 202 and 130 participants, respectively (64.4% follow-up rate). The evaluative properties of the P-CPQ and FIS were acceptable. There were substantial and highly statistically significant reductions in mean P-CPQ and FIS scores after treatment, with effect sizes ranging from moderate to large, depending on the subscale being examined. The minimally important difference was shown by almost two-thirds of the children treated. CONCLUSION: The provision of dental treatment under GA for young children with severe dental caries experience is associated with substantial and highly significant improvements in both their OHRQoL and in the impact on their families. The P-CPQ and the FIS show promise as evaluative measures for use in dental health services research."," Community Dent Oral Epidemiol 36(2): 108-117.","New Zealand",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation"]
[103,"Mant, J., et al. (2000). \"Family support for stroke: a randomised controlled trial.\" Lancet 356(9232): 808-813.",null,"Mant, J., et al.","Family support for stroke: a randomised controlled trial","BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers. METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction. FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar. INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients."," Lancet 356(9232): 808-813.","UK",2000,"Stroke",null,"CSI","Adults","RCT"]
[104,"Marin, D. B., et al. (2000). \"The Caregiver Activity Survey (CAS): longitudinal validation of an instrument that measures time spent caregiving for individuals with Alzheimer's disease.\" Int J Geriatr Psychiatry 15(8): 680-686.",null,"Marin, D. B., et al.","The Caregiver Activity Survey (CAS): longitudinal validation of an instrument that measures time spent caregiving for individuals with Alzheimer's disease","Family members incur substantial financial costs during the course of caring for an individual with Alzheimer's disease. Much of this cost is associated with time spent in caregiving tasks, including supervision and communication with the patient, and assisting with activities of daily living. We have previously reported on the cross sectional reliability and validity of a scale that measures time spent caregiving, the Caregiver Activity Survey (CAS). This study extends our results to a longitudinal study of the validity of the instrument. Forty-four outpatients with Alzheimer's disease who lived with a primary caregiver were followed over a period of 1 year 6 months. At six month intervals, the patients were administered the Mini Mental State Exam (MMSE), Alzheimer's Disease Assessment Scale (ADAS), and the Physical Self Maintenance Scale (PSMS). Caregivers completed the CAS. Over time, the CAS correlated significantly with the MMSE (r=-0.58, p=0.000), ADAS cognitive subscale (r=0.56, p=0. 000) and PSMS (r=0.49, p=0.000). As patients declined, caregivers spent less time communicating with and more time supervising the patient. Excluding the communication item, time spent caregiving increased significantly over time. This prospective study longitudinally validates the CAS with Alzheimer's patients."," Int J Geriatr Psychiatry 15(8): 680-686.","USA",2000,"Dementia",null,"CAS","Older Persons","Validation"]
[105,"Marin, D., et al. (2003). \"Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer's disease.\" Int Psychogeriatr 15(4): 385-398.",null,"Marin, D., et al.","Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer's disease","BACKGROUND: Alzheimer's disease (AD) places a significant burden on health care systems worldwide. As new treatments are developed, their cost-effectiveness is often assessed to help health care professionals make informed decisions. In addition to the more common practice of assessing direct medical costs, indirect costs, including time spent in caregiving, should be evaluated. METHODS: This study examined the potential effects of the dual cholinesterase inhibitor rivastigmine (Exelon) on caregivers of patients with AD. Results from two 26-week, placebo-controlled trials have demonstrated the clinically relevant and statistically significant efficacy of rivastigmine (6-12 mg/day) compared to placebo, on cognition, activities of daily living, and global functioning. By delaying progression of AD, significant savings in caregiver burden are anticipated, as measured by time spent caregiving and its related costs. Data collected in a prospective, observational study of AD patients and their caregivers were used to establish the relationship between disease severity (based on Mini-Mental State Examination [MMSE] score) and time spent caregiving (according to the 5-item Caregivers Activity Survey score). A significant correlation was observed between the two scores (N = 43, r = -.56, p < .0001), demonstrating that more time for supervision from caregivers is required as the disease progresses. This finding was used to estimate the reduced caregiver burden resulting from the delay in disease progression that was demonstrated with use of rivastigmine. RESULTS: Over a 2-year period, the reduction in time spent in caregiving reached 691 hours for caregivers of patients with mild AD (MMSE score 21-30), resulting in a total savings of approximately 11,253 dollars. Treatment of patients with moderately severe AD was also evaluated. The trend was similar but the impact was less, suggesting an economic benefit to early therapy. CONCLUSION: Early diagnosis and a pharmacologic intervention that allows the patients to remain at home longer by delaying disease progression would have a beneficial impact on patients, caregivers, and payers, and should therefore be encouraged through initiatives designed to identify and treat patients early in the course of disease."," Int Psychogeriatr 15(4): 385-398.","USA",2003,"Dementia",null,"CAS","Older Persons","Observational"]
[106,"Martin-Carrasco, M., et al. (2009). \"Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers.\" Int J Geriatr Psychiatry 24(5): 489-499.",null,"Martin-Carrasco, M., et al.","Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers","OBJECTIVES: Caregivers of patients with Alzheimer's disease (AD) experience physical and psychological stress due to the caring experience. This study evaluated the benefits of a Psychoeducational Intervention Program (PIP) on caregiver burden in southern Europe. METHODS: A multicentre, prospective, randomised study was conducted. One hundred and fifteen caregivers of patients with clinical diagnosis of AD (DSM-IV-TR criteria, mini-mental score = 10-26) and functional impairment (Lawton and Brody Scale and Katz Index) were recruited. Caregivers were randomised to receive either PIP (IG: intervention group, n = 60) or standard care (CG: control group, n = 55). PIP consisted of eight individual sessions over 4 months for teaching strategies for confronting problems of AD patient care. Caregivers' stress, quality of life and perceived health were measured using validated scales (Zarit, SF-36, GHQ-28, respectively) at baseline and after 4 and 10-months follow-up. RESULTS: Mean change in caregiver burden (Zarit baseline-Zarit final scores) was statistically significant (p = 0.0083) showing an improvement in the IG (-8.09 points) and a worsening in the CG (2.08 points). The IG showed significant improvements in all the well-being perception areas measured by the SF-36 and a significantly lower score in the GHQ-28 (p = 0.0004). 97.7% of caregivers and 88.6% of therapists considered PIP 'useful/very useful' at 4 months (the end of PIP) whereas at 10 months the estimates were 93.2% and 86.3%, respectively. CONCLUSIONS: Psychosocial training of caregivers can minimise caregiver distress and help them to develop problem-solving strategies. A PIP improves quality of life and the perceived health of caregivers of patients with AD."," Int J Geriatr Psychiatry 24(5): 489-499.","Spain",2009,"Dementia",null,"Zarit","Older Persons","Observational"]
[107,"Martin-Carrasco, M., et al. (2014). \"Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: the EDUCA-II randomized trial.\" Alzheimer Dis Assoc Disord 28(1): 79-87.",null,"Martin-Carrasco, M., et al.","Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: the EDUCA-II randomized trial","We conducted a multicenter, prospective, evaluator-blinded, 2-arm parallel randomized trial to compare the effectiveness of a group psychoeducational intervention (PIP) with that of standard care in dementia caregivers. The primary outcome was the burden experience evaluated by the Zarit Burden Interview. Secondary outcomes were psychological distress evaluated with the scaled General Health Questionnaire-28 items, and quality of life evaluated with the Short-Form Health Survey 12. Effectiveness endpoint was at 4 months since inception. Statistical analyses used complete case and intention-to-treat analysis (ITT). The trial recruited 238 caregivers from 22 research sites (115 randomized to PIP, 123 randomized to standard care). No differences were found in the Zarit Burden Interview scores (complete case analysis: mean difference=-1.02, 95% confidence interval=-4.41 to 2.37; ITT analysis: MD=-0.55, 95% confidence interval=-3.64 to 2.55), the Short-Form Health Survey 12 domain scores (all P>0.05), and total General Health Questionnaire-28 items scores and some of its subscales (all P>0.05) except the anxiety and insomnia subscale for the ITT analysis (P=0.03). In summary, PIP in modality of group intervention was not better than standard care to reduce caregiver burden and overall psychological distress or to improve quality-of-life domains. EDUCA-II trial registry: ISRCTN14411440."," Alzheimer Dis Assoc Disord 28(1): 79-87.","Spain",2014,"Dementia",null,"Zarit","Older Persons","RCT"]
[108,"Martinez-Martin, P., et al. (2007). \"Caregiver burden in Parkinson's disease.\" Mov Disord 22(7): 924-931; quiz 1060.",null,"Martinez-Martin, P., et al.","Caregiver burden in Parkinson's disease","Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being."," Mov Disord 22(7): 924-931; quiz 1060.","Spain",2007,"Parkinson's",null,"Zarit","Adults","Observational"]
[109,"Martinez-Martin, P., et al. (2008). \"Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.\" Mov Disord 23(12): 1673-1680.",null,"Martinez-Martin, P., et al.","Burden, perceived health status, and mood among caregivers of Parkinson's disease patients","The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL."," Mov Disord 23(12): 1673-1680.","Spain",2008,"Parkinson's",null,"Zarit","Adults","Observational"]
[110,"McGrath, C., et al. (2008). \"Translation and evaluation of a Chinese version of the Child Oral Health-related Quality of Life measure.\" Int J Paediatr Dent 18(4): 267-274.",null,"McGrath, C., et al.","Translation and evaluation of a Chinese version of the Child Oral Health-related Quality of Life measure","OBJECTIVE: This study aims to translate and evaluate the performance of a Chinese version of the Child Oral Health-related Quality of Life (COHQoL) measure composed of the Child Perception Questionnaire (CPQ), Parental Perception Questionnaire (PPQ), and Family Impact Scale (FIS). BASIC RESEARCH DESIGN: Chinese versions of the measures were derived through a forward-backward translation. A consecutive sample of 168 children attending paediatric dental and orthodontic clinics in Hong Kong were recruited along with their attending primary caregiver. Children self-completed the 37-item CPQ and their attending primary caregiver self-completed the 31-item PPQ and 14-item FIS consecutively and independently. Reassessments were conducted prior to their next appointment. RESULTS: CPQ, PPQ, and FIS scores were associated with children's global rating of oral health (P < 0.05) and oral well-being (P < 0.05) supporting their construct validity. In addition, variations in CPQ, PPQ, and FIS were apparent with respect to patient group (P < 0.05) supporting their ability to distinguish between patient groups. Cronbach alpha values (internal reliability) and intraclass correlation coefficient values (test-retest reliability) for the three measures were > 0.80. CONCLUSION: A Chinese version of the three components of the COHQoL measure was developed with minor modifications. In psychometric testing, the validity of the three components was supported and they demonstrated acceptable reliability."," Int J Paediatr Dent 18(4): 267-274.","China",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation"]
[111,"McKinney, M., et al. (2002). \"Evaluation of cognitive assessment in stroke rehabilitation.\" Clin Rehabil 16(2): 129-136.",null,"McKinney, M., et al.","Evaluation of cognitive assessment in stroke rehabilitation","OBJECTIVE: To assess the effect of cognitive assessment on the functional outcome of stroke patients and quality of life for both patients and their carers. DESIGN: A multicentre, single-blind, randomized controlled trial. SETTING AND PARTICIPANTS: Two hundred and twenty-eight stroke patients were recruited from hospital wards in three UK centres. INTERVENTIONS: Patients were screened for cognitive impairment and randomly allocated to either routine care (116 patients) or routine care plus a detailed cognitive assessment (112 patients). MAIN OUTCOME MEASURES: Outcome was assessed three and six months after recruitment by an independent assessor blind to the intervention on Extended ADL, Cognitive Failures Questionnaire, General Health Questionnaire-28 for patients and carers and Carer Strain Index. RESULTS: There was no significant difference between the two groups in patients' functional outcome, perceived cognitive ability, level of psychological distress or satisfaction with care. There was a trend for the assessment group to have lower levels of carer strain (p = 0.06). CONCLUSIONS: The provision of information about cognitive assessment in stroke rehabilitation may decrease carer strain."," Clin Rehabil 16(2): 129-136.","UK",2002,"Stroke",null,"CSI","Adults","RCT"]
[112,"McMillan, S. C. and M. Mahon (1994). \"The impact of hospice services on the quality of life of primary caregivers.\" Oncol Nurs Forum 21(7): 1189-1195.",null,"McMillan, S. C. and M. Mahon","The impact of hospice services on the quality of life of primary caregivers","PURPOSE/OBJECTIVES: To evaluate the effects of hospice services on the quality of life of primary caregivers and to evaluate the validity and reliability of a new tool. DESIGN: Exploratory, descriptive. SETTING: A nonprofit hospice in Florida; clients are cared for primarily in the home. SAMPLE: 68 adult primary caregivers of 68 patients with cancer enrolled in hospice care and 62 noncaregiving adults. METHODS: Subjects were recruited on admission to hospice and completed the Caregiver Quality of Life Index (CQLI) and the Hospice Quality of Life Index (HQLI) on admission and during week four of hospice care. MAIN RESEARCH VARIABLES: Caregivers' assessment of their own physical, social, financial, and emotional quality of life; patients' assessment of their physical, psychological, spiritual, social, and financial well-being. FINDINGS: No significant differences were found in caregiver quality-of-life scores from admission to week four, and no correlations existed between quality-of-life scores and age or education. A significant positive correlation was found between the caregivers' quality of life and their estimate of the patients' quality of life. Evidence exists that the CQLI is valid and reliable. CONCLUSIONS: Caregivers of terminally ill people with cancer can maintain their quality of life during the first month of hospice care. The caregiver's perception of the patient's quality of life may affect the caregiver's quality of life. IMPLICATIONS FOR NURSING PRACTICE: When offering support to primary caregivers, the hospice team should include the four domains (physical, emotional, social, and financial) and should focus on the interrelatedness of the patient's and caregiver's quality of life."," Oncol Nurs Forum 21(7): 1189-1195.","USA",1994,"Cancer",null,"CQLI","Unspecified","Observational"]
[113,"Mei, Y., et al. (2017). \"Validity and reliability of Chinese version of Adult Carer Quality of Life questionnaire (AC-QoL) in family caregivers of stroke survivors.\" PLoS One 12(11): e0186680.",null,"Mei, Y., et al.","Validity and reliability of Chinese version of Adult Carer Quality of Life questionnaire (AC-QoL) in family caregivers of stroke survivors","The Adult Carer Quality of Life questionnaire (AC-QoL) is a reliable and valid instrument used to assess the quality of life (QoL) of adult family caregivers. We explored the psychometric properties and tested the reliability and validity of a Chinese version of the AC-QoL with reliability and validity testing in 409 Chinese stroke caregivers. We used item-total correlation and extreme group comparison to do item analysis. To evaluate its reliability, we used a test-retest reliability approach, intraclass correlation coefficient (ICC), together with Cronbach's alpha and model-based internal consistency index; to evaluate its validity, we used scale content validity, confirmatory factor analysis (CFA) and exploratory factor analysis (EFA) via principal component analysis with varimax rotation. We found that the CFA did not in fact confirm the original factor model and our EFA yielded a 31-item measure with a five-factor model. In conclusions, although some items performed differently in our analysis of the original English language version and our Chinese language version, our translated AC-QoL is a reliable and valid tool which can be used to assess the quality of life of stroke caregivers in mainland China. Chinese version AC-QoL is a comprehensive and good measurement to understand caregivers and has the potential to be a screening tool to assess QoL of caregiver."," PLoS One 12(11): e0186680.","China",2017,"Stroke",null,"AC-QOL","Adults","Validation"]
[114,"Miaskowski, C., et al. (1997). \"Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes.\" Pain 72(1-2): 217-226.",null,"Miaskowski, C., et al.","Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes","The purposes of this study were to determine if there were differences in pain intensity scores, pain duration scores, mood states, and quality of life of oncology outpatients whose pain intensity scores were congruent with their family caregivers compared to patients whose pain intensity scores were non-congruent and to determine if there were differences in mood states, health status, and caregiver strain between family caregivers whose pain intensity scores were congruent with their family members and those family caregivers whose pain intensity scores were non-congruent. A total of 78 patient-caregiver dyads participated in the study. Patients completed a Demographic Questionnaire, a Cancer Pain Questionnaire, the Profile of Mood States, and the Multidimensional Quality of Life Scale-Cancer 2. Family caregivers completed a demographic questionnaire, the Profile of Mood States, the Caregiver Strain Index, and the Medical Outcome Study Short-Form Health Survey. Both patients and family caregivers rated the patient's pain intensity using a visual analogue scale (VAS). Patients in the non-congruent dyads (i.e. difference of >10 on the VAS score) had significantly more mood disturbance and a poorer quality of life than patients in the congruent dyads. Family caregivers in the non-congruent dyads had significantly higher caregiver strain score than caregivers in the congruent dyads. These findings suggest that differences in the perception of the pain experience between patients and their family caregivers is associated with deleterious outcomes for the patient and their family caregivers."," Pain 72(1-2): 217-226.","USA",1997,"Cancer",null,"CSI","Unspecified","Observational"]
[115,"Miyashita, M., et al. (2006). \"Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan.\" Health Qual Life Outcomes 4: 52.",null,"Miyashita, M., et al.","Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan","BACKGROUND: We constructed a concise multidimensional care burden scale that reflects circumstances unique to Japan, with a focus on intractable neurological diseases. We surveyed 646 family caregivers of patients with intractable neurological diseases or stroke using 28 preliminary care burden scale items obtained from qualitative research. The results were used to finalize the feeling of care burden scale (BIC: burden index of caregivers), and verify its reliability and validity. METHODS: The survey was conducted among caregivers providing home health care to patients with intractable neurological diseases (PD [Parkinson's disease], SCD [spinocerebellar degeneration], MSA [multiple system atrophy], and ALS [amyotrophic lateral sclerosis]) or CVA (cerebrovascular accident) using a mailed, self-administered questionnaire between November, 2003 and May, 2004. RESULTS: Response rates for neurological and CVA caregivers were 50% and 67%, respectively, or 646 in total (PD, 279; SCD, 78; MSA, 39; ALS, 30; and CVA, 220). Item and exploratory factor analyses led to a reduction to 11 items, comprising 10 items from the 5 domains of time-dependent burden, emotional burden, existential burden, physical burden, and service-related burden; and 1 item on total burden. Examination of validity showed a moderate correlation between each domain of the BIC and the SF-8 (Health related quality of life scale, Short Form-8), while the correlation coefficient of the overall BIC and CES-D was 0.62. Correlation between the BIC and ZBI, a preexisting care burden scale, was high (r = 0.84), while that with the time spent on providing care was 0.47. The ICC (Intraclass correlation coefficient) by test-retest reliability was 0.83, and 0.68 to 0.80 by individual domain. CONCLUSION: These results show that the BIC, a new care burden scale comprising 11 items, is highly reliable and valid."," Health Qual Life Outcomes 4: 52.","Japan",2006,"Parkinson's,ALS,Neurology,Stroke",null,"Zarit,BIC","Adults","Validation"]
[116,"Morales-Gonzales, J. M., et al. (2004). \"A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study.\" Mult Scler 10(1): 47-54.",null,"Morales-Gonzales, J. M., et al.","A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study","OBJECTIVE: To describe a holistic and comprehensive approach to the assessment of sufferer's perceptions of health-related quality of life (HRQoL) in a cohort of multiple sclerosis (MS) patients. METHODS: The GEDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functional Assessment of Multiple Sclerosis quality of life instrument Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. RESULTS: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9+/-0.9 years. Age, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Qualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. On the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients' physical disability. Furthermore, primary caregivers described the influence of MS on their own occupational status, their nonacceptance of the disease, a perception of a lack of support by other members of the family as well as a 'selfish and intransigent' attitude of the patients themselves. CONCLUSIONS: The analysis of the GEDMA cohort provides valuable information that helps clarify the impact of MS on patients' HRQoL."," Mult Scler 10(1): 47-54.","Spain",2004,"Multiple Sclerosis",null,"Zarit","Adults","Observational"]
[117,"Morimoto, T., et al. (2003). \"Caregiver burden and health-related quality of life among Japanese stroke caregivers.\" Age Ageing 32(2): 218-223.",null,"Morimoto, T., et al.","Caregiver burden and health-related quality of life among Japanese stroke caregivers","OBJECTIVE: the present study had two main purposes: 1. To examine the relationship between caregiver burden and health-related quality of life in family caregivers of older stroke patients in Japan; and 2. To examine which characteristics of the caregiving situation significantly relate to increased burden. METHODS: subjects (n=100) were recruited from seven randomly selected neurological hospitals with out-patient rehabilitation clinics in western Japan and interviewed using the Zarit Burden Interview, the Modified Barthel Index, the Geriatric Depression Scale and the SF-12 Health Survey for health-related quality of life. RESULTS: increased caregiver burden was significantly related to worsening health-related quality of life, particularly worsening mental health (Geriatric Depression Scale and SF-12 items), even after controlling for caregiver age, sex, chronic illness, average caregiving hours/day, and functional dependence of the care-recipient. DISCUSSION: findings indicate that increased burden significantly relates to decreased health-related quality of life among stroke caregivers. In addition, the prevalence of depressive symptoms among caregivers was twice that of community dwelling older people. Roughly 52% of caregivers had Geriatric Depression Scale scores that warranted further evaluation. Despite the prevalence of depressive symptoms only one caregiver had received any psychiatric care during their caregiving tenure."," Age Ageing 32(2): 218-223.","Japan",2003,"Stroke",null,"Zarit","Older Persons","Observational"]
[118,"Murphy, K. R., et al. (2003). \"Effects of budesonide inhalation suspension compared with cromolyn sodium nebulizer solution on health status and caregiver quality of life in childhood asthma.\" Pediatrics 112(3 Pt 1): e212-219.",null,"Murphy, K. R., et al.","Effects of budesonide inhalation suspension compared with cromolyn sodium nebulizer solution on health status and caregiver quality of life in childhood asthma","OBJECTIVE: To compare the effects of 2 nebulizable controller asthma medications on caregiver and pediatric quality of life. METHODS: In this 52-week, randomized trial, children aged 2 to 6 years with mild to moderate persistent asthma received budesonide inhalation suspension 0.5 mg (total daily dose) once or twice daily (n = 168) or cromolyn sodium nebulizer solution 20 mg 4 times daily (n = 167) for 8 weeks, with dosage adjustment thereafter at the investigators' discretion. The Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), Compliance/Caregiver Satisfaction Questionnaire (CCSQ), Modified Child Health Questionnaire-Parent Form 50 (CHQ-PF50), and Functional Status-II(R) (FS-II[R]) Questionnaire were administered at baseline and weeks 8, 28, and 52. Global assessments of ease of asthma management and child health status were obtained from caregivers and physicians at the end of the study. RESULTS: Improvements from baseline in domain-specific (activities and emotional function) and total PACQLQ scores were greater at each time point (weeks 8, 28, and 52) for caregivers of patients treated with budesonide compared with caregivers of patients receiving cromolyn sodium. Only the budesonide group met the criterion for a clinically important improvement (>or=0.5 unit change) in all PACQLQ domains by week 8, which was maintained at weeks 28 and 52. Moreover, improvements surpassed the criterion for moderate clinical importance (1.0 unit change) in all PACQLQ domains for the budesonide group, but this level of improvement was only achieved in the activities domain (at week 28) for the cromolyn sodium group. Based on the CCSQ, budesonide resulted in greater caregiver satisfaction, treatment convenience, ease of use, and compliance compared with cromolyn sodium. Thus, 90.7% of caregivers in the budesonide group were \"completely or very satisfied\" compared with 53.4% in the cromolyn sodium group. Over half (54.6%) of caregivers in the budesonide group rated budesonide \"highly or very convenient\" compared with 23% for cromolyn sodium; 77% rated budesonide \"extremely or very easy\" to use compared with 47% for cromolyn. Adherence with daily medication regimens was reported for 76% of children in the budesonide group compared with 57% in the cromolyn sodium group. Child health status, as indicated by mean FS-II(R) scores, showed improvements from baseline in both groups at weeks 8, 28, and 52. There was a trend for these improvements to be superior in the budesonide group. Additionally, budesonide was superior to cromolyn sodium in caregiver and physician global assessments. At the end of the study, 76% of caregivers of children receiving budesonide reported asthma management to be \"a great deal easier\" compared with the start of the study, and 74% rated the overall health status of their child as \"much better now than 1 year ago.\" In contrast, only 29% and 37% of caregivers whose children received cromolyn sodium provided these respective ratings. CONCLUSIONS: Budesonide inhalation suspension improved the quality of life for caregivers of children with asthma. Caregivers of children treated with budesonide had significantly fewer limitations in daily activities and emotional functioning compared with caregivers of children treated with cromolyn sodium nebulizer solution. The improvements in caregiver quality of life occurred earlier with budesonide compared with cromolyn sodium. Only caregivers in the budesonide group had a clinically important mean change from baseline in all PACQLQ domains by week 8. These benefits were maintained at week 52. Children treated with budesonide inhalation suspension and cromolyn sodium experienced improvements in health status, assessed using the FS-II(R). The greatest differences between treatments were seen in the disease-specific portion of the FS-II(R), which relates impairments in functional status to the child's illness. Caregiver and physician global assessment indicated significantly better overall child health after 1 year of treatment with budesonide, supporting an improvement in health status. Clinical trials in children 4 to 16 years of age with asthma have demonstrated greater effectiveness of inhaled corticosteroids versus cromolyn sodium on several clinical measures of efficacy. Measures of asthma control in this study, reported in detail elsewhere [Leflein et al. Pediatrics 2002;109:866-872], also have shown greater improvements with budesonide therapy. Treatment with budesonide inhalation suspension resulted in a significantly lower mean rate of asthma exacerbations, significantly longer times to first asthma exacerbation, significantly longer times to first additional use of chronic asthma therapy, and significant improvements in asthma symptom scores and breakthrough medication use compared with cromolyn sodium therapy. Additionally, children receiving budesonide inhalation suspension experienced more symptom-free days and episode-free days compared with children receiving cromolyn sodium. Safety profiles were similar between the 2 treatment groups. Budesonide inhalation suspension was associated with significantly greater caregiver satisfaction, convenience, ease of use, and compliance compared with cromolyn sodium nebulizer solution. This greater caregiver satisfaction and quality of life may be related to the greater asthma control achieved in children treated with budesonide therapy compared with cromolyn sodium. In addition, the convenience of once- or twice-daily dosing with budesonide inhalation suspension, compared with 3- or 4-times-daily dosing of cromolyn sodium, may decrease caregiver burden and enhance the willingness of caregivers to adhere to treatment regimens prescribed for their young children with asthma. This effect on caregiver adherence could further improve treatment effectiveness. This is the first clinical trial comparing the effects of a nebulized corticosteroid with that of an alternative nebulized therapy on quality of life in young children with asthma and their families. Compared with nebulized cromolyn sodium, budesonide inhalation suspension not only provides better overall child health status and asthma management, but greater caregiver quality of life and greater caregiver satisfaction, convenience, ease of use, and compliance."," Pediatrics 112(3 Pt 1): e212-219.","USA",2003,"Respiratory",null,"CCSQ","Children and Adolescents","RCT"]
[119,"Nauser, J. A., et al. (2011). \"A new instrument to measure quality of life of heart failure family caregivers.\" J Cardiovasc Nurs 26(1): 53-64.",null,"Nauser, J. A., et al.","A new instrument to measure quality of life of heart failure family caregivers","BACKGROUND AND PURPOSE: Family caregivers of heart failure (HF) patients experience poor physical and mental health leading to poor quality of life. Although several quality-of-life measures exist, they are often too generic to capture the unique experience of this population. The purpose of this study was to evaluate the psychometric properties of the Family Caregiver Quality of Life (FAMQOL) Scale that was designed to assess the physical, psychological, social, and spiritual dimensions of quality of life among caregivers of HF patients. SAMPLE AND METHODS: Psychometric testing of the FAMQOL with 100 HF family caregivers was conducted using item analysis, Cronbach alpha, intraclass correlation, factor analysis, and hierarchical multiple regression guided by a conceptual model. Caregivers were predominately female (89%), white, (73%), and spouses (62%). RESULTS: Evidence of internal consistency reliability (alpha=.89) was provided for the FAMQOL, with item-total correlations of 0.39 to 0.74. Two-week test-retest reliability was supported by an intraclass correlation coefficient of 0.91. Using a 1-factor solution and principal axis factoring, loadings ranged from 0.31 to 0.78, with 41% of the variance explained by the first factor (eigenvalue=6.5). With hierarchical multiple regression, 56% of the FAMQOL variance was explained by model constructs (F8,91=16.56, P<.001). Criterion-related validity was supported by correlations with SF-36 General (r=0.45, P<.001) and Mental (r=0.59, P<.001) Health subscales and Bakas Caregiving Outcomes Scale (r=0.73, P<.001). Evidence of internal and test-retest reliability and construct and criterion validity was provided for physical, psychological, and social well-being subscales. CONCLUSIONS: The 16-item FAMQOL is a brief, easy-to-administer instrument that has evidence of reliability and validity in HF family caregivers. Physical, psychological, and social well-being can be measured with 4-item subscales. The FAMQOL scale could serve as a valuable measure in research, as well as an assessment tool to identify caregivers in need of intervention."," J Cardiovasc Nurs 26(1): 53-64.","India",2011,"Cardiac",null,"BCOS,FAMQOL","Adults","Validation"]
[120,"Okcin, F. and A. Karadakovan (2012). \"Reliability and validity of the quality of life -family version (QOL-FV) in Turkish family caregivers of patients with cancer.\" Asian Pac J Cancer Prev 13(9): 4235-4840.",null,"Okcin, F. and A. Karadakovan","Reliability and validity of the quality of life -family version (QOL-FV) in Turkish family caregivers of patients with cancer","OBJECTIVES: Family caregivers (FCs) are often the primary source of social and emotional support for cancer patients and play a major role in how well they manage their illness. The aim of this study was to create an Turkish version of the Quality of Life - Family Version (QOL-FV) and to evaluate its psychometric properties in a sample of FCs of cancer patients. MATERIALS AND METHODS: This study was carried out with the FCs of 218 patients with cancer. Data were collected with a Demographic Questionnaire and the QOL-FV and The Multidimentional Scale of Perceived Social Support (MSPSS). The QOL-FV was developed by Ferrell and Grant and is composed of 4 subdimensions. Linguistic validity, translation, back translation, and content validity were tested with expert opinions. Test-retest reliability, and internal consistency reliability were assessed. Construct validity was tested by factor analysis and with the scale of the MSPSS. RESULTS: The family caregivers were between the ages of 46-56 (32.6%), a great number of them being male (52.8%). The scale is made up of four subdimensions. The result of the test-retest analysis of this scale was calculated as r:0.86. As a result of the reliability analysis, six items were eliminated from the scale, factor analyses were fulfilled according to varimax transformation through the method of principal components. Four new subdimensions were restrustured at the end of the analysis. The scale of Cronbach alphacoefficient was calculated as 0.90. Concurrent validity showed low correlations with the MSPSS (r=0.29). CONCLUSIONS: The QOL-FV, adapted into Turkish, was found to have sufficient reliability and validity."," Asian Pac J Cancer Prev 13(9): 4235-4840.","Turkey",2012,"Cancer",null,"QOL-FV,MSPSS","Unspecified","Validation"]
[121,"Palma, E., et al. (2012). \"An observational study of family caregivers' quality of life caring for patients with a stoma.\" Gastroenterol Nurs 35(2): 99-104.",null,"Palma, E., et al.","An observational study of family caregivers' quality of life caring for patients with a stoma","The management of stomas following surgical resection often falls to family caregivers. The purpose of this observational survey was to investigate the family caregivers' quality of life caring for a patient with ostomy. Between August 2008 and July 2009, 144 eligible Italian family members caring for a patient with ostomy were evaluated using two questionnaires: the Caregiver Quality of Life Cancer survey and the Caregiver Burden Inventory. Both questionnaires have similar capabilities to explore the burden of caregiving. The Caregiver Quality of Life Cancer reported a total Quality of Life score of 97.11 (SD = 14.36), whereas the Caregiver Burden Inventory score for the sample was 51.95 (SD = 10.72). Variables of interest included health, self-perception, nationality, society and territory in which the person lives, education, job, standard of living, house, family, relations with partner, and friendship. Only those who provided complete data (n = 123) were included in the analyses. Data show that generally the family caregiver is married (92%), female (97%), and aged 55.15 years (SD = 16.5). The burden of assistance is higher in younger single caregivers, whereas those with children or who are aged have economic concerns. Loss of spirituality is reported in people aged 30-49 and 71-90 years. Family Caregivers' Quality of Life is poor. Further research is needed to determine the effectiveness of social and economic interventions to help family caregivers in the management of long-term assistance."," Gastroenterol Nurs 35(2): 99-104.","Italy",2012,"Cancer",null,"CBI","Unspecified","Observational"]
[122,"Pani, S. C., et al. (2013). \"Parental perceptions of the oral health-related quality of life of autistic children in Saudi Arabia.\" Spec Care Dentist 33(1): 8-12.",null,"Pani, S. C., et al.","Parental perceptions of the oral health-related quality of life of autistic children in Saudi Arabia","The aim of this study was to use parental perception to assess the Oral Health Related Quality of Life (OHRQoL) of children with Autism. A total of 59 families of children with Autism who had an unaffected sibling were cross-matched for age and gender of the affected child with families with no autistic children. The parents were administered the Parental Perception Questionnaire (P-CPQ) and the Family impact scale (FIS) components of and Arabic version of the Child Oral Health Related Quality of Life questionnaire (COHRQL). The P-CPQ scores of Children with Autism were compared with those of their unaffected siblings and those of children from families with no autistic child, while the FIS scores were compared between families with and without an autistic child. Regression models were constructed to show the association of sociodemographic factors on the OHRQoL of autistic children. The results of this study seem to suggest that childhood autism results in a reduced OHRQoL for both the affected child as well as the family. The apparent reduced parental concern with unaffected siblings of autistic children, when compared to parental concern towards children in families with no autistic child is an area that could merit further research."," Spec Care Dentist 33(1): 8-12.","Saudi Arabia",2013,"Developmental",null,"FIS,P-CPQ","Children and Adolescents","Observational"]
[123,"Papastavrou, E., et al. (2014). \"Factors associated with quality of life among family members of patients with dementia in Cyprus.\" Int Psychogeriatr 26(3): 443-452.",null,"Papastavrou, E., et al.","Factors associated with quality of life among family members of patients with dementia in Cyprus","BACKGROUND: Numerous studies have reported that caring for a person with dementia is a stressful experience. Nevertheless, quality of life (QoL) measures have commonly focused on patients, while factors that influence caregivers' QoL have not been clearly identified. In order to contribute to the understanding of caregivers' QoL, we explored how QoL among caregivers is related to their perceived level of burden, their reported number of depressive symptoms, and the level of care recipients' dependency. METHODS: Seventy-six caregivers referred by the two main referral centers of patients with dementia in Cyprus participated in a cross-sectional survey with a descriptive correlational design. Caregivers completed four instruments, measuring burden (ZBI), depression (CES-D), quality of life-Alzheimer's disease (QoL-AD), and activities of daily living (ADL) of the care recipients and provided socio-demographic information. RESULTS: The majority of the participants scored high levels of burden (M = 43.32/SD = 15.23) and depression (59.2% scored over the cut-off point of 16). QoL was only moderate (M = 30.89/SD = 8.21) and negatively correlated with burden (r = -32, p = 0.01) and depression (r = -0.296, p < 0.05). Only a weak correlation was observed between QoL and ADL (r = 0.167, p = 0.15). Hierarchical multiple regression analyses revealed that overall burden scores and income were associated with QoL, explaining 20% of the overall variance of the caregiver's QoL. CONCLUSION: Further research is necessary to investigate which additional domains determine QoL and further our understanding of the factors that may reduce the burden imposed on dementia caregivers."," Int Psychogeriatr 26(3): 443-452.","Cyprus",2014,"Dementia",null,"Zarit","Older Persons","Observational"]
[124,"Pemberton, J., et al. (2012). \"Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study.\" J Pediatr Surg 47(5): 999-1004.",null,"Pemberton, J., et al.","Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study","INTRODUCTION: High-quality prospective cohort studies are needed to answer research questions focused on prognosis. To determine the feasibility of conducting this type of research, a prospective cohort study focused on investigating health-related quality of life (HRQoL) of caregivers of children who require a gastrostomy (G) tube at the McMaster Children's Hospital was piloted from November 2009 to May 2011. METHODS: Recruitment began after research ethics board approval. Feasibility data were collected on all caregivers of patients assessed for G tube placement by a pediatric surgeon including recruitment status, protocol compliance, and HRQoL. Data were collected at 1 month and 2 weeks before surgery and 2 weeks and 3, 6, 9, and 12 months after surgery. Health-related quality of life measures included the Short Form 36v2, the Caregiver Strain Index, and the Parent Experience of Childhood Illness. RESULTS: A total of 117 G procedures were conducted, and 39 caregivers met eligibility criteria. Thirty-one caregivers were enrolled (79.5% recruitment rate), 8 parents were not interested, and 26 were missed. Protocol adherence to the follow-up schedule is high (91.3%). CONCLUSION: Conducting high-level research with long-term follow-up in pediatric surgery is challenging. Factors including low prevalence of patients and competing priorities for busy clinicians indicate that multicenter collaboration is essential to research success in this field."," J Pediatr Surg 47(5): 999-1004.","Canada",2012,"Unspecified",null,"CSI","Children and Adolescents","Observational"]
[125,"Pentek, M., et al. (2016). \"Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe.\" Eur J Health Econ 17 Suppl 1: 89-98.",null,"Pentek, M., et al.","Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe","OBJECTIVES: To assess the health-related quality of life (HRQOL) of patients with mucopolysaccharidosis (MPS) and their caregivers and to quantify the disease-related costs from a societal perspective. METHODS: In the context of a multi-country study of rare diseases (BURQOL-RD project), a cross-sectional survey was performed among MPS patients in seven European countries. Data on demographic characteristics, health resource utilization, informal care, and loss of labor productivity were collected. The EQ-5D, Barthel index (BI), and Zarit burden interview (ZBI) questionnaires were used to assess patients' and their informal caregivers' quality of life, patients' functional ability, and caregivers' burden, respectively. RESULTS: Altogether, 120 patients (children 62 %, females 40 %) and 66 caregivers completed the questionnaire. Patients' mean age was 16.5 years and median age at diagnosis was 3 years. Adult patients' average EQ-5D and EQ VAS scores varied across countries from 0.13 to 0.43 and 30.0 to 62.2, respectively, mean BI was 46.7, and ZBI was 32.7. Mean informal care time was 51.3 h/week. The mean total annual cost per patient (reference year 2012) was euro24,520 in Hungary, euro25,993 in France, euro84,921 in Italy, euro94,384 in Spain, and euro209,420 in Germany. Costs are also shown to differ between children and adults. Direct costs accounted for most of the costs in all five countries (80, 100, 99, 98, and 93 %, respectively). CONCLUSIONS: MPS patients experience substantial loss of HRQOL and their families take a remarkable part in their care. Although utilization of health and social care resources varies significantly across countries, MPS incurs considerable societal costs in all the countries studied."," Eur J Health Econ 17 Suppl 1: 89-98.","Hungary,Spain,Italy,Bulgaria,UK,Germany,Sweden,France",2016,"Genetic",null,"Zarit","Children and Adolescents","Observational"]
[126,"Pham-Short, A., et al. (2016). \"Quality of Life in Type 1 Diabetes and Celiac Disease: Role of the Gluten-Free Diet.\" J Pediatr 179: 131-138.e131.",null,"Pham-Short, A., et al.","Quality of Life in Type 1 Diabetes and Celiac Disease: Role of the Gluten-Free Diet","OBJECTIVE: To evaluate quality of life (QoL) and glycemic control in youth with type 1 diabetes (T1D) and celiac disease vs T1D only. We hypothesized that QoL scores would be lower in youth with T1D and celiac disease and those nonadherent to the gluten-free diet (GFD). STUDY DESIGN: This case control study included 35 youth with T1D and 35 with T1D and celiac disease matched for age, sex, diabetes duration, and hemoglobin A1c level. QoL was assessed in participants and parents using the Pediatric Quality of Life Inventory Generic Core Scale, Pediatric Quality of Life Inventory Diabetes Module. and the General Well-Being Scale; youth with T1D and celiac disease also completed the celiac disease-specific DUX questionnaire and parents completed the Pediatric Quality of Life Inventory Family Impact Scale. Questionnaires were scored from 0 to 100; higher scores indicate better QoL or well-being. Scores were compared between T1D vs T1D with celiac disease, with subgroup analysis by GFD adherence vs nonadherence and therapy (continuous subcutaneous insulin infusion vs multiple daily injections). RESULTS: Youth with T1D and celiac disease reported similar generic and diabetes-specific QoL to T1D only. GFD nonadherent vs adherent youth reported lower diabetes-specific QoL (mean score 58 vs 75, P = .003) and lower general well-being (57 vs 76, P = .02), as did their parents (50 vs 72, P = .006), and hemoglobin A1c was higher (9.6% vs 8.0%, P = .02). Youth with T1D and celiac disease using continuous subcutaneous insulin infusion vs multiple daily injections had similar generic and diabetes-specific QoL and A1C (8.6 vs 8.2%, P = .44), but were less happy having to follow a lifelong diet (59 vs 29, P = .007). CONCLUSIONS: Youth with T1D and celiac disease who do not adhere to the GFD have lower QoL and worse glycemic control. Novel strategies are required to understand and improve adherence in those with both conditions."," J Pediatr 179: 131-138.e131.","Australia",2016,"Various,Diabetes",null,"PedsQL-FIM","Children and Adolescents","Observational"]
[127,"Pillas, M., et al. (2016). \"Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers).\" Qual Life Res 25(1): 81-88.",null,"Pillas, M., et al.","Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers)","PURPOSE: Atypical parkinsonism (AP) has a considerable impact on the lives not only of patients but also of their carers. The aim of this study was to develop an instrument for assessing the quality of life (QoL) of carers of patients with AP. METHODS: A 40-item pool was generated from in-depth interviews with carers of patients with AP, a thorough review of the existing literature and consultation with movement disorder experts. Item refinement and reduction was performed using the results of pilot testing and a survey in 282 carers of multiple system atrophy (MSA) patients and 226 carers of progressive supranuclear palsy (PSP) patients. A validation study, with responses of 243 carers of MSA and 187 carers of PSP patients, was undertaken to evaluate the psychometric properties of the final 26-item scale. RESULTS: The validation study results suggest that the scale is unidimensional and has high internal consistency (Cronbach's alpha = 0.96). The correlations of scale scores with patients' health status and QoL measures, such as PDQ-39 summary score and EQ-5D index (Spearman's rho = 0.56 and -0.31, respectively, P < 0.001), as well as carers' measures, such as Caregiver Burden Inventory (CBI) total and EQ-5D index (Spearman's rho = 0.85 and -0.39, respectively, P < 0.001), document the convergent and concurrent validity of the scale. ANOVA results support the discriminant validity of the scale, as evidenced by its capacity to differentiate between carers with varying levels of self-reported health. CONCLUSIONS: The 26-item Parkinsonism Carers QoL (PQoL Carer) is a concise instrument with adequate psychometric qualities that can be used for clinical and research purposes."," Qual Life Res 25(1): 81-88.","UK,USA",2016,"Parkinson's",null,"CBI","Adults","Validation"]
[128,"Pritchard, C., et al. (2004). \"Comparison of cohorts of elective and emergency neurosurgical patients: psychosocial outcomes of acoustic neuroma and aneurysmal sub arachnoid hemorrhage patients and carers.\" Surg Neurol 62(1): 7-16.",null,"Pritchard, C., et al.","Comparison of cohorts of elective and emergency neurosurgical patients: psychosocial outcomes of acoustic neuroma and aneurysmal sub arachnoid hemorrhage patients and carers","OBJECTIVES: To compare the psychosocial outcomes of cohorts of elective [Acoustic Neuroma (AN)] and emergency [Aneu-rysmal Sub Arachnoid Hemorrhage (ASAH)] Neurosurgical patients and carers. METHODS: The standardized Wessex Patient Carer Questionnaire was designed with patients and carers and provided psychosocial and economic outcome data following elective or emergency surgery. Clinical data on size of tumor and size of bleed, respectively, were extracted from Consultant notes. RESULTS: Both cohorts were generally satisfied with neurosurgical in-patient care but both suffered high-economic costs and were predominately very dissatisfied with community care. There were significant psychosocial differences between elective and emergency patients, and despite greater relative physical disability among elective patients, it was the emergency cohort who had worse psychosocial outcomes. CONCLUSIONS: Despite many common psychosocial features, the differences between the cohorts were mainly psychological rather than physiological, because of greater 'post-traumatic-stress-reaction' in the emergency cohort, indicating the need for appropriate psychosocial care immediately after neurosurgery to reduce unnecessary distress and costs to patients, carers, and community."," Surg Neurol 62(1): 7-16.","UK",2004,"Neurology",null,"WPCQ","Unspecified","Observational"]
[129,"Pritchard, C., et al. (2004). \"Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size.\" Clin Otolaryngol Allied Sci 29(4): 324-330.",null,"Pritchard, C., et al.","Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size","The objective was to explore psycho-socio-economic outcomes of a 2-year cohort of patients having surgery for an acoustic neuroma, and carers and their relationship to tumour size after surgery. The Wessex Patient Carer Questionnaire was designed in conjunction with Patients and Carers, to determine psycho-socio-economic outcomes. The results were juxtaposed against clinical profiles. The House-Brackman (HB) scale was used to assess facial function at 6 and 12 months after operation. The cohort contained 102 patients. There were 87% effective responders. Half were aged below 54 years and 30% had school-aged children. The majority (93%) of patients were operated via the translabyrinthine approach. Patients with large tumours, i.e. greater than 3 cm (28%), had most post-treatment physical problems, including hearing and balance difficulties, and 42% reported difficulty eating in public. Thirty-four per cent felt 'stressed' and 18%'depressed'. After 6 months, facial function was recorded as HB scale 5/6 in 21% of patients but by 1 year only 8% of patients were HB 5/6. Patients and carers were generally very satisfied with their in-patient neurosurgical care, but significantly dissatisfied with post-discharge care - particularly the shortcoming of the community services. The majority of families felt 'unsupported' and only 20% of patients had confidence in their General Practitioner's knowledge. Families faced severe socio-economic disruption and patients\"time-off-work' was estimated to cost pound 954,000. Carers carried considerable post-discharge psychological burdens and costs to the public purse were calculated to be pound 52,000."," Clin Otolaryngol Allied Sci 29(4): 324-330.","UK",2004,"Neurology",null,"WPCQ","Unspecified","Observational"]
[130,"Rapp, T., et al. (2015). \"An Analysis of the Public Financial Support Eligibility Rule for French Dependent Elders with Alzheimer's Disease.\" Value Health 18(5): 553-559.",null,"Rapp, T., et al.","An Analysis of the Public Financial Support Eligibility Rule for French Dependent Elders with Alzheimer's Disease","BACKGROUND: It is crucial to define health policies that target patients with the highest needs. In France, public financial support is provided to dependent patients: it can be used to finance informal care time and nonmedical care use. Eligibility for public subsidies and reimbursement of costs is associated with a specific tool: the autonomie gerontologie groupes iso-ressources (AGGIR) scale score. OBJECTIVE: Our objective was to explore whether patients with Alzheimer's disease who are eligible for public financial support have greater needs than do noneligible patients. METHODS: Using data from the Dependance des patients atteints de la maladie d'Alzheimer en France study, we calculated nonmedical care expenditures (in euro) using microcosting methods and informal care time demand (hours/month) using the Resource Use in Dementia questionnaire. We measured the burden associated with informal care provision with Zarit Burden Interview. We used a modified two-part model to explore the correlation between public financial support eligibility and these three variables. RESULTS: We find evidence of higher informal care use, higher informal caregivers' burden, and higher care expenditures when patients have an AGGIR scale score corresponding to public financial support eligibility. CONCLUSIONS: The AGGIR scale is useful to target patients with the highest costs and needs. Given our results, public subsidies could be used to further sustain informal caregivers networks by financing programs dedicated to lowering informal caregivers' burden."," Value Health 18(5): 553-559.","France",2015,"Dementia",null,"Zarit","Older Persons","Observational"]
[131,"Rebollo, P., et al. (2004). \"Different evaluations of the health related quality of life in dialysis patients.\" J Nephrol 17(6): 833-840.",null,"Rebollo, P., et al.","Different evaluations of the health related quality of life in dialysis patients","BACKGROUND: Sometimes patients on dialysis treatment cannot express their health-related quality of life (HRQoL); and therefore, it is necessary to use the assessment made by their carers. The purpose of this study was to evaluate the agreement between dialysis patients' HRQoL and the assessment made by their carers, and to investigate which variables were associated with the differences found. METHODS: Two hundred and twenty-two pairs of patients and carers were selected from 14 dialysis units. Patients' HRQoL was evaluated by the patients themselves and by their family carer (FAM), nurse (NUR) and physician (PH) using the Karnofsky scale (KS) and the EuroQOL5D (EQ5D) scale. Patients and their family carers answered the Medical Outcome Survey 36-Item Short Form Health Survey (SF-36), and the family carers answered the Zarit burden interview. Physicians scored the patients' comorbidity index and nurses evaluated the Barthel index (BI). RESULTS: The intraclass correlation coefficients (ICC) between the ratings provided by patients and their carers were: KS: 0.80(FAM), 0.76(NUR) and 0.62(PH); EQ5D: 0.42(FAM), 0.48(NUR) and 0.29(PH). The agreement between the EQ5D dimension scores varied from moderate for mobility and self-care to insignificant for pain and anxiety/depression. The variables associated to the size of the differences found were the Zarit burden interview score and the mental component score (MCS) (SF-36) of the carer, the physical component score (PCS) (SF-36), the BI score and patient comorbidity, and the physician's age and experience. CONCLUSIONS: Family carers and health care providers of dialysis patients are reasonably aware of the patient's level of function and well being and can be useful sources of proxy HRQoL information. Nevertheless, discrepancies can occur, depending in part on the different characteristics of patients and their caregivers."," J Nephrol 17(6): 833-840.","Spain",2004,"Renal",null,"Zarit","Unspecified","Observational"]
[132,"Reeves, M. J., et al. (2017). \"Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol.\" BMC Neurol 17(1): 115.",null,"Reeves, M. J., et al.","Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol","BACKGROUND: For some stroke patients and caregivers, navigating the transition between hospital discharge and returning home is associated with substantial psychosocial and health-related challenges. Currently, no evidence-based standard of care exists that addresses the concerns of stroke patients and caregivers during the transition period. Objectives of the Michigan Stroke Transitions Trial (MISTT) are to test the impact of a social worker home-based case management program, as well as an online information and support resource, on patient and caregiver outcomes after returning home. METHODS: The Michigan Stroke Transitions Trial is a randomized, pragmatic, open (un-blinded), 3-group parallel designed superiority trial conducted in 3 Michigan hospitals. Eligible participants are adult acute stroke patients discharged home directly or within 4 weeks of being discharged to a rehabilitation facility. The patient's primary caregiver is also invited to participate. Patients are randomized on the day they return home using a randomized block design. Consented patients discharged to a rehabilitation facility who do not go home within 4 weeks are dropped from the study. The 2 study interventions begin within a week of returning home and conclude 3 months later. The 3-group design compares usual care to either a home-based social worker stroke case management (SWSCM) program, or a combination of the SWSCM program plus access to an online information and support resource (MISTT website). Outcomes data are collected at 7-days and 90-days by trained telephone interviewers. Primary patient outcomes include the PROMIS global 10 score (a generic Quality of Life scale), and the Patient Activation Measure (PAM). Caregiver outcomes include the Bakas Caregiving Outcomes Scale. Final analysis will be based on 214 randomized acute stroke patients. To accommodate subjects excluded due to prolonged rehabilitation stays, as well as those lost-to-follow-up, up to 315 patients will be consented. DISCUSSION: The MISTT study will determine if a home-based case management program designed around the needs and preferences of stroke patients and caregivers, alone or in combination with a patient-centered online information and support resource can improve stroke survivor and caregiver outcomes 3 months after returning home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02653170 (Protocol ID: 135457). Registered April 9, 2015."," BMC Neurol 17(1): 115.","USA",2017,"Stroke",null,"BCOS","Adults","Protocol"]
[133,"Richters, A., et al. (2017). \"Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity.\" Alzheimers Res Ther 9(1): 26.",null,"Richters, A., et al.","Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity","BACKGROUND: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving. The aim of this study was to extend insight into psychometric properties of the perseverance time instrument, specifically the construct validity, responsiveness, and predictive validity, within the population of informal caregivers for PwD. METHODS: Data from two studies among informal caregivers of community-dwelling PwD in the Netherlands were used. The first study included 198 caregivers from a single region in the Netherlands and lasted 1 year. The second was a cross-sectional nationwide study with 166 caregivers for PwD. Questionnaires of both studies included questions regarding demographics and informal care, perseverance time, and other informal caregiver outcomes (Caregiver Strain Index, Self-rated Burden scale, Care-related Quality of Life instrument, and visual analogue scale health scores). Construct validity and responsiveness were assessed using a hypothesis-testing approach. The predictive validity of demographic characteristics and perseverance time for living situation after 1 year (living at home, institutionalized, or deceased) was assessed with multivariable multinomial regression. RESULTS: All but one of the hypotheses regarding construct validity were met. Three of five hypotheses regarding responsiveness were met. Perseverance time scores at baseline were associated with living situation after 1 year (p < 0.01), unlike age, sex, and relationship with PwD. Perseverance time strongly increased predictive power for living situation after 1 year (c-index between 0.671 and 0.775) in addition to demographic characteristics. CONCLUSIONS: This study supports previous findings regarding the construct validity of the perseverance time instrument and adds new evidence of good construct validity, responsiveness, and predictive validity. The predictive power of perseverance time scores for living situation exceeds the predictive power of other burden measures and indicates informal care as an important factor for maintaining the patient at home."," Alzheimers Res Ther 9(1): 26.","Netherlands",2017,"Dementia",null,"CSI,CQLI,SRB","Older Persons","Validation"]
[134,"Rivera-Navarro, J., et al. (2003). \"Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study.\" Disabil Rehabil 25(18): 1057-1064.",null,"Rivera-Navarro, J., et al.","Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study","PURPOSE: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. METHODS: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). RESULTS: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. CONCLUSIONS: In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden."," Disabil Rehabil 25(18): 1057-1064.","Spain",2003,"Multiple Sclerosis",null,"Zarit","Unspecified","Observational"]
[135,"Rodriguez-Sanchez, E., et al. (2010). \"Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol.\" BMC Public Health 10: 559.",null,"Rodriguez-Sanchez, E., et al.","Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol","BACKGROUND: Although Primary Health Care (PHC) Teams are used to deal with prevention and treatment of sanitary problems in adults with chronic diseases, they usually have a lack of experience in development of psychotherapeutic interventions. However, these interventions are the ones that achieve better results to reduce symptomatology and improve emotional state of caregivers.The study aims to evaluate the effectiveness of an intervention of psychotherapy in improving the mental health and Quality of life of caregivers. This intervention is based on theoretical approaches to care adjusted to cognitive theory, in order to be applied in primary health care centres. METHODS/DESIGN: This is multicentre clinical trials study, randomized in two parallel groups, carry out in two PHC, Study population: 150 caregivers will be included by consecutive sampling and they will be randomized the half to experimental group and the other half to control group. They provide mostly all the assistance to care-dependent familiars receiving attention in PHC Centers. MEASUREMENTS: Each caregiver will be evaluated on a personal interview. The caregivers' assessment protocol: 1) Assessment of different socio-demographic related to care, and caregiver's personal situation. 2)Care-dependent individuals will also be assessed by Barthel Index and Pfeiffer Questionnaire (SPMSQ). 3)Change in caregivers will be the principal measure: family function (Family APGAR Questionnaire), burden short questionnaire (Short Zarit Burden Interview), quality of life (Ruiz & Baca: 1993 Questionnaire), the Duke-UNK Functional Social Support Questionnaire, the General Health Questionnaire-12, and changes in Dysfunctional Thoughts about caring. 4) Intervention implementation measures will also be assessed. INTERVENTION: A psychotherapeutic intervention will be 8 sessions of 90 minutes in groups. This intervention has been initially developed for family caregivers of patients with dementia. DISCUSSION: Psychotherapeutic interventions have been proved to obtain better results to reduce symptomatology and improve emotional state of caregivers. Moreover, this intervention has been proved to be effective in a different setting other than PHC, and was developed by professionals of Mental Health. If we found that this intervention is effective in PHC and with our professionals, it would be an important instrument to offer to caregivers of care-dependent patients. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT01177696."," BMC Public Health 10: 559.","Spain",2010,"Unspecified",null,"Zarit,FAQ,FSS","Older Persons","Protocol"]
[136,"Rosell-Murphy, M., et al. (2014). \"Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.\" BMC Fam Pract 15: 53.",null,"Rosell-Murphy, M., et al.","Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol","BACKGROUND: Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. METHODS/DESIGN: DESIGN: CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). STUDY AREA: Primary Health Care network (9 PHCTs). STUDY PARTICIPANTS: Primary informal caregivers of patients receiving home health care from participating PHCTs. SAMPLE: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. INTERVENTION: a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. CONTROL: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test). DISCUSSION: If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice. TRIAL REGISTRATION: Clinical trials registrar: NCT02065427."," BMC Fam Pract 15: 53.","Spain",2014,"Unspecified",null,"Zarit,FAQ","Unspecified","Protocol"]
[137,"Sambrook, R., et al. (2004). \"Canadian Outcomes Study in Dementia: study methods and patient characteristics.\" Can J Psychiatry 49(7): 417-427.",null,"Sambrook, R., et al.","Canadian Outcomes Study in Dementia: study methods and patient characteristics","OBJECTIVE: To describe the methods and patient characteristics of the Canadian Outcomes Study in Dementia (COSID). METHODS: COSID is a 3-year prospective study of dementia patients living in the community at the time of study registration. We assessed patients' cognition, behaviour, and functioning every 6 months, using the Modified Mini-Mental State Examination (3MS), the Neuropsychiatric Inventory (NPI), and the Functional Autonomy Measurement System (SMAF), respectively. We assessed caregivers, using the Zarit Burden Interview (ZBI). Additional information included the Global Deterioration Scale (GDS), patients' driving status, and clinical information including family history, dementia type, concomitant medications, and comorbid conditions. From the patient or caregiver, we collected details of inpatient and outpatient resources used by the patient and (or) caregiver. RESULTS: We enrolled 766 patients from 31 Canadian sites. Overall mean age was 76.8 years, and mean age of onset was 73.1 years. Of the total patients, 98% were white, 54% were women, and 84% were diagnosed with Alzheimer's disease. Mean baseline 3MS was 66.5, NPI was 9.5, and SMAF was 18.30. Of these patients, 48% reported a GDS score of 3 (that is, moderate), 16% reported a GDS score of 4 (that is, moderately severe), and the remaining 36% reported a GDS score of 1 or 2 (that is, mild or very mild). At baseline, 83% of patients received cholinesterase inhibitors, 46% received nonsteroidal antiinflammatory drugs, 39% received vitamin E, and 25% received antidepressants. Adult day care and home help were the largest cost factors in this population, with mean monthly costs of $65 and $64, respectively. We found interesting differences in the resources used among geographic regions and care settings. CONCLUSIONS: COSID is already generating valuable information about treatment patterns, outcomes, and resource use in Canadian patients with dementia. As the data mature, it will be possible to build robust models on treatment effectiveness and costs of care."," Can J Psychiatry 49(7): 417-427.","Canada",2004,"Dementia",null,"Zarit","Older Persons","Observational"]
[138,"Santos-Garcia, D., et al. (2016). \"COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), a global--clinical evaluations, serum biomarkers, genetic studies and neuroimaging--prospective, multicenter, non-interventional, long-term study on Parkinson's disease progression.\" BMC Neurol 16: 26.",null,"Santos-Garcia, D., et al.","COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), a global--clinical evaluations, serum biomarkers, genetic studies and neuroimaging--prospective, multicenter, non-interventional, long-term study on Parkinson's disease progression","BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative disorder causing motor and non-motor symptoms that can affect independence, social adjustment and the quality of life (QoL) of both patients and caregivers. Studies designed to find diagnostic and/or progression biomarkers of PD are needed. We describe here the study protocol of COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), an integral PD project based on four aspects/concepts: 1) PD as a global disease (motor and non-motor symptoms); 2) QoL and caregiver issues; 3) Biomarkers; 4) Disease progression. METHODS/DESIGN: Observational, descriptive, non-interventional, 5-year follow-up, national (Spain), multicenter (45 centers from 15 autonomous communities), evaluation study. Specific goals: (1) detailed study (clinical evaluations, serum biomarkers, genetic studies and neuroimaging) of a population of PD patients from different areas of Spain, (2) comparison with a control group and (3) follow-up for 5 years. COPPADIS-2015 has been specifically designed to assess 17 proposed objectives. STUDY POPULATION: approximately 800 non-dementia PD patients, 600 principal caregivers and 400 control subjects. Study evaluations: (1) baseline includes motor assessment (e.g., Unified Parkinson's Disease Rating Scale part III), non-motor symptoms (e.g., Non-Motor Symptoms Scale), cognition (e.g., Parkinson's Disease Cognitive Rating Scale), mood and neuropsychiatric symptoms (e.g., Neuropsychiatric Inventory), disability, QoL (e.g., 39-item Parkinson's disease Quality of Life Questionnaire Summary-Index) and caregiver status (e.g., Zarit Caregiver Burden Inventory); (2) follow-up includes annual (patients) or biannual (caregivers and controls) evaluations. Serum biomarkers (S-100b protein, TNF-alpha, IL-1, IL-2, IL-6, vitamin B12, methylmalonic acid, homocysteine, uric acid, C-reactive protein, ferritin, iron) and brain MRI (volumetry, tractography and MTAi [Medial Temporal Atrophy Index]), at baseline and at the end of follow-up, and genetic studies (DNA and RNA) at baseline will be performed in a subgroup of subjects (300 PD patients and 100 control subjects). Study periods: (1) recruitment period, from November, 2015 to February, 2017 (basal assessment); (2) follow-up period, 5 years; (3) closing date of clinical follow-up, May, 2022. FUNDING: Public/Private. DISCUSSION: COPPADIS-2015 is a challenging initiative. This project will provide important information on the natural history of PD and the value of various biomarkers."," BMC Neurol 16: 26.","Spain",2016,"Parkinson's",null,"Zarit","Older Persons","Protocol"]
[139,"Sautter, J. M., et al. (2014). \"Caregiver experience during advanced chronic illness and last year of life.\" J Am Geriatr Soc 62(6): 1082-1090.",null,"Sautter, J. M., et al.","Caregiver experience during advanced chronic illness and last year of life","OBJECTIVES: To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses-advanced chronic illness and the last year of life. DESIGN: Longitudinal, observational cohort study. SETTING: Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers. PARTICIPANTS: Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n = 62) or end-of-life (EOL; n = 62) care recipient-caregiver dyads. MEASUREMENTS: Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances. RESULTS: During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden. CONCLUSION: Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness."," J Am Geriatr Soc 62(6): 1082-1090.","USA",2014,"End of life",null,"CRA","Adults","Observational"]
[140,"Schneider, J. W., et al. (2001). \"Health-related quality of life and functional outcome measures for children with cerebral palsy.\" Dev Med Child Neurol 43(9): 601-608.",null,"Schneider, J. W., et al.","Health-related quality of life and functional outcome measures for children with cerebral palsy","The aim of this study was to examine measures of health-related quality of life (HRQL) in children with cerebral palsy (CP) by comparing scores of a generic HRQL measure, the Child Health Questionnaire (CHQ); a disease-specific HRQL measure for children with CP, the Caregiver Questionnaire (CQ); and a pediatric functional measure, the Wee-Functional Independence Measure (WeeFIM). Participants included 30 caregivers of children with CP. The caregivers' children were a mean age of 8 years 6 months (17 females, 13 males). The ethnic origin of the children was 18 African-American, 8 white, 3 Hispanic, and 1 Middle Eastern. Significant correlations were found between the CQ and WeeFIM total and subscale scores (r=0.388 to 0.641). There was no correlation between the CHQ and CQ total summary scores, but significant correlations were found between the CHQ subscales related to parent time and family cohesion and the CQ total and subscale scores (r=0.386 to 0.481). The lack of correlation between the CHQ and WeeFIM indicates HRQL and function are different constructs that cannot be inferred from each other. The fair relationship found between the CQ and WeeFIM suggests that the constructs measured in these two assessments overlap. The lack of correlation between the total summary scores of the CHQ and CQ suggests the CQ may be a more specific measure of HRQL for this population that reflects the impact of the child's condition on the caregiver."," Dev Med Child Neurol 43(9): 601-608.","USA",2001,"Neurology",null,"CgQ","Children and Adolescents","Validation"]
[141,"Schneider, J., et al. (1999). \"EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden.\" Int J Geriatr Psychiatry 14(8): 651-661.",null,"Schneider, J., et al.","EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden","BACKGROUND: The challenges presented by the increasing public health and social impact of caring for people with dementia have become clear in recent years. Previous research has identified that, while there are positive as well as negative elements to the caring role, carers are at high risk of mental health problems and that the comprehensive burden of caring has social, economic and health based elements. Co-resident carers, especially spouses, are of primary importance in maintaining people with dementia in their own homes in the community rather than in institutional settings which may be both more costly and have greater environmental poverty. There have, however, been few studies which have sought to investigate factors associated with carer burden and differences and similarities between countries. In this study we aimed to produce a cross-national profile of co-resident spouse carers across the European Community, with particular attention to: living arrangements; formal and informal support; service satisfaction; perceived burden; and psychological well-being. METHOD: Twenty co-resident spouse carers of people with NINCDS-ADRDA probable dementia, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview which included: sociodemographic data; data on health and social service use; the Carer Burden Inventory (CBI); the General Health Questionnaire-12 (GHQ-12); and open-ended qualitative questions about the experience of caring. RESULTS: Two hundred and eighty couples were recruited. There was marked variation in all variables of interest between countries, but there were consistently high ratings of carer burden (mean CBI scores between 28 and 52) and psychological distress (between 40% and 75% scoring 4 or more on the GHQ-12). Using multivariate analyses (generalized linear modelling) to estimate the individual associations of variables of interest with carer burden, controlling for the effects of all other variables in the model, the following results were obtained: 11.4% (p = 0.003) of the variance was accounted for by between-country variation; 4.9% (p < 0.001) by expressed financial dissatisfaction; 4.5% (p = 0.001) by lower carer age; 3.2% (p = 0.004) by difficulties with spouse behavioural deficits; and 2.0% (p = 0.024) by perceived negative social reactions. There was a low level of contact with support groups and Alzheimer's disease societies despite the samples having been of service contacts. CONCLUSIONS: This study confirms the high level of burden and mental distress in spouse carers for people with Alzheimer's disease in the European Community. It suggests that there are elements of burden which may vary by country but also elements which have a common effect in all. These data suggest avenues for the primary and secondary prevention of burden by addressing clinical issues (e.g. behavioural disturbance); public attitudes and education (e.g. negative social reactions); economic support for carers (e.g. financial dissatisfaction); and higher risk groups (e.g. younger spouse carers)."," Int J Geriatr Psychiatry 14(8): 651-661.","UK",1999,"Dementia",null,"CBI","Older Persons","Observational"]
[142,"Shepperd, S., et al. (1998). \"Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: three month follow up of health outcomes.\" Bmj 316(7147): 1786-1791.",null,"Shepperd, S., et al.","Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: three month follow up of health outcomes","OBJECTIVES: To compare hospital at home care with inpatient hospital care in terms of patient outcomes. DESIGN: Randomised controlled trial with three month follow up. SETTING: District general hospital and catchment area of neighbouring community trust. SUBJECTS: Patients recovering from hip replacement (n=86), knee replacement (n=86), and hysterectomy (n=238); elderly medical patients (n=96); and patients with chronic obstructive airways disease (n=32). INTERVENTIONS: Hospital at home care or inpatient hospital care. MAIN OUTCOME MEASURES: Dartmouth COOP chart to measure patients' general health status; SF-36 to measure possible limitations in physical functioning of patients with hysterectomy; disease specific measures-chronic respiratory disease questionnaire, Barthel index for elderly medical patients, Oxford hip score, and Bristol knee score; hospital readmission and mortality data; carer strain index to measure burden on carers; patients' and carers' preferred form of care. RESULTS: At follow up, there were no major differences in outcome between hospital at home care and hospital care for any of the patient groups except that those recovering from hip replacement reported a significantly greater improvement in quality of life with hospital at home care (difference in change from baseline value 0.50, 95% confidence interval 0.13 to 0.88). Hospital at home did not seem suitable for patients recovering from a knee replacement, as 14 (30%) of patients allocated to hospital at home remained in hospital. Patients in all groups preferred hospital at home care except those with chronic obstructive airways disease. No differences were detected for carer burden. Carers of patients recovering from knee replacement preferred hospital at home care, while carers of patients recovering from a hysterectomy preferred hospital care. CONCLUSIONS: Few differences in outcome were detected. Thus, the cost of hospital at home compared with hospital care becomes a primary concern."," Bmj 316(7147): 1786-1791.","UK",1998,"Respiratory,Musculoskeletal,Frailty,Various",null,"CSI","Older Persons,Adults","RCT"]
[143,"Shimoyama, S., et al. (2003). \"Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.\" Perit Dial Int 23 Suppl 2: S200-205.",null,"Shimoyama, S., et al.","Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan","OBJECTIVE: Recent studies have found that patients with chronic renal failure suffer from depression and other symptoms of decreased mental health. However, little is know about caregiver burden and mental health among patients' families. In the present study, we examined the relationship in Japan between peritoneal dialysis (PD) patients and caregivers with regard to health-related quality of life (HRQOL) and caregiver burden. METHOD: In March of 2002, we recruited 60 subjects--26 patients on continuous ambulatory peritoneal dialysis (CAPD), and 34 caregivers--from a PD patient support group in southern Japan. We used the Kidney Disease Quality of Life Short Form (KDQOL-SF) and the Medical Outcomes Study Short Form 36 (SF-36) to measure HRQOL. We used the Zarit Burden Interview (ZBI) to measure caregiver burden. Data was also collected on each patient's duration of illness, treatment modality, age, sex, and medical history. All data were collected by mail surveys. RESULTS: Mean age of the PD patients was 48.2; mean age of the caregivers was 46.6. Mean caregiver burden on the ZBI was 14.1, which is considerably lower than that reported among caregivers for patients with dementia or stroke. Caregivers and patients both rated their general health and vitality among the lowest of the eight dimensions on the KDQOL-SF. In addition, patients scored lower than a normative population in all dimensions and significantly lower than caregivers in the dimensions of role physical functioning, role emotional functioning, and social functioning. Compared to national normative data for their age group, caregivers scored substantially lower in general health, vitality, and mental health. CONCLUSIONS: Patients on CAPD are at risk for social role dysfunction, and their caregivers are at risk for decreased mental health. Further research is needed to identify interventions that can improve the HRQOL of CAPD patients and their family caregivers."," Perit Dial Int 23 Suppl 2: S200-205.","Japan",2003,"Renal",null,"Zarit","Adults","Observational"]
[144,"Sorrento, T. A., et al. (2007). \"A consultant pharmacist's role on a geriatric assessment service.\" Consult Pharm 22(11): 935-943.",null,"Sorrento, T. A., et al.","A consultant pharmacist's role on a geriatric assessment service","OBJECTIVE: This paper describes the role of a consultant pharmacist on a geriatric assessment service team. SETTING: The Geriatric Assessment Service (GAS) is part of an Independent Practice Association (IPA) in Rochester, New York. PRACTICE DESCRIPTION: The consultant pharmacist is responsible for the promotion of appropriate, cost-effective prescribing of drug therapy in physician offices affiliated with the IPA. PRACTICE INNOVATION: A team included a consultant pharmacist, social worker, and registered nurse with the objective of providing support to community physicians in the care of at-risk, frail, medically complex, community-dwelling adults 75 years of age or older. Assessments completed varied according to patient needs. Recommendations were made to the primary care provider based on the results of each patient assessment. MAIN OUTCOME MEASUREMENTS: Caregiver Strain Index, Drug Appropriateness Measure, Patient satisfaction, Physician satisfaction. RESULTS: Enrollment rate in the program rose from 19% in the first quarter to 63% in the fourth quarter. The Drug Appropriateness Measure on average improved to greater than 60% for patients enrolled. Member satisfaction averaged 90%. The Caregiver Strain Index showed an improvement of 28%. An observational comparison of GAS-enrolled patients to noninterventional patients showed a lower per-member, per-month cost change from 2005 to 2006. CONCLUSION: The GAS program provided assistance to primary care providers caring for community-dwelling, at-risk seniors, resulting in improved pharmaceutical care, reduction in caregiver strain, and positive patient satisfaction."," Consult Pharm 22(11): 935-943.","USA",2007,"Frailty",null,"CSI","Older Persons","Observational"]
[145,"Sousa, M. F., et al. (2015). \"Awareness of disease is different for cognitive and functional aspects in mild Alzheimer's disease: a one-year observation study.\" J Alzheimers Dis 43(3): 905-913.",null,"Sousa, M. F., et al.","Awareness of disease is different for cognitive and functional aspects in mild Alzheimer's disease: a one-year observation study","Awareness of disease can be compromised to some degree in a proportion of people with dementia, with evident differences across domains. We designed this study to determine the factors associated with the impairment of awareness over a period of time. Using a longitudinal design, 69 people with mild Alzheimer's disease and their family caregivers completed the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, the Quality of Life in Alzheimer's Disease Scale, the Mini-Mental State Examination, the Clinical Dementia Rating Scale, the Cornell Scale for Depression in Dementia, the Pfeffer Functional Activities Questionnaire, the Neuropsychiatric Inventory, and the Zarit Burden Interview. Univariate and logistic regression analyses were conducted to examine the contribution of the various factors. The level of awareness of disease was significantly lower (p </= 0.001) between baseline and at follow up. At follow up, there was no change in the level of awareness of disease in 61.8%, whereas 25.4% worsened. However, the level of awareness improved in 12.3%. Logistic regression demonstrated that functional deficits (OR = 1.12, 95% CI: (1.03-1.22), p </= 0.01), and caregivers' quality of life (OR = 0.83, 95% CI: (0.70-0.98), p </= 0.05) were a significant predictor of impaired awareness of disease. The results confirmed that awareness and cognition are relatively independent, and showed that in people with mild dementia, unawareness is mainly manifested by poor recognition of changes in the activities of daily living, and decrease in quality of life."," J Alzheimers Dis 43(3): 905-913.","Brazil",2015,"Dementia",null,"Zarit","Older Persons","Observational"]
[146,"Stone, K. (2014). \"Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website.\" Rehabil Nurs 39(2): 76-85.",null,"Stone, K.","Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website","PURPOSE: Research indicates a need for improved caregiver preparation to provide care following a patient's discharge from inpatient rehabilitation. The aim of this project was to test the use of web-based resources to enhance the preparedness and satisfaction of such caregivers. METHODS: A website was provided to caregivers with resources and e-mail access to a rehabilitation nurse practitioner. Care recipients had the following diagnoses: stroke, amputation, trauma/orthopedic, brain injury or debility. Preparedness for caregiving was assessed before utilization of the website and after discharge. Satisfaction of the resources was assessed after discharge. Measures included the Preparedness for Caregiver Scale and the Client Satisfaction Questionnaire. Seventy caregivers completed the predischarge preparedness tool. Thirty returned both tools postdischarge. FINDINGS: Analysis of pre-post test data indicated increased preparedness to provide care after resource use, no increase meeting the caregiver's personal needs, and satisfaction with the resources provided. The caregivers of brain-injured patients reported less preparation as caregivers than those who cared for patients with other diagnoses. Although high interest was reported in using e-mail with the nurse practitioner, the resource was not utilized. CLINICAL RELEVANCE: This preliminary study supports the clinical relevance of Internet resources to improve caregiver preparation. With shortened hospital stays, providing applicable and evidence-based websites and other online services for caregivers can complement other healthcare services. More research focused on preparing caregivers and supporting personal caregiver needs is needed to evaluate the impact on overall rehabilitation outcomes."," Rehabil Nurs 39(2): 76-85.","USA",2014,"Stroke",null,"PCS","Unspecified","Observational"]
[147,"Suri, R. S., et al. (2011). \"Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials.\" Nephrol Dial Transplant 26(7): 2316-2322.",null,"Suri, R. S., et al.","Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials","BACKGROUND: Patients with end-stage renal disease often rely on unpaid caregivers to assist them with their daily living and medical needs. We characterized the degree to which patients enrolled in the Frequent Hemodialysis Network (FHN) trials perceived burden on their unpaid caregivers. METHODS: Participants completed the Cousineau Perceived Burden Scale, a 10-question scale previously developed in hemodialysis (HD) patients. Associations between baseline burden score and prespecified variables were evaluated using multivariable linear regression. RESULTS: Of 412 participants, 236 (57%) reported having unpaid caregivers. Compared to those without unpaid caregivers, these participants had greater comorbidity (Charlson mean 1.8 +/- 1.8 versus 1.2 +/- 1.7, P < 0.001), lower Short Form-36 (SF-36) Physical Health Composite (PHC) scores (median 33 versus 41, P < 0.001, higher Beck Depression scores (mean 16 +/- 11 versus 12 +/- 9, P < 0.001), and worse physical function. Median Cousineau score was 35 (interquartile range 20-53) (theoretical range 0-100). Over 50% felt their caregivers were overextended, yet 60% were confident that their caregivers could handle the demands of caring for them. Higher perceived burden was not associated with ability to be randomized. In adjusted analyses, Cousineau score was inversely associated with SF-36 PHC and Mental Health Composite scores and directly associated with Beck Depression score (each P < 0.001). CONCLUSIONS: Most HD patients in the FHN trials perceived substantial burden on their unpaid caregivers, and self-perceived burden was associated with worse depression and quality of life. Evaluation of the effects of frequent HD on perceived burden borne by caregivers in the FHN trials will help to establish the net benefits/determents of these intensive dialytic strategies."," Nephrol Dial Transplant 26(7): 2316-2322.","Canada",2011,"Renal",null,"CPBS","Unspecified","Observational"]
[148,"Tailor, V. K., et al. (2017). \"Quality of life and functional vision in children treated for cataract-a cross-sectional study.\" Eye (Lond) 31(6): 856-864.",null,"Tailor, V. K., et al.","Quality of life and functional vision in children treated for cataract-a cross-sectional study","PurposeChildren with cataract and their families face intensive medical and surgical management, with numerous hospital attendances, topical medications, and surgical procedures, as well as uncertainty about the child's future visual ability, education, and independence. Little is known about the impact on functional visual ability, vision-, and health-related quality of life (VR-, HR-QoL).Patients and methodsSeventy two children aged 2-16 years (mean 8.45, SD 4.1) treated for developmental or secondary cataract and their parents/carers completed three validated instruments measuring functional visual ability, VR-, and HR-QoL: the Cardiff Visual Ability Questionnaire for Children (CVAQC), Impact of Vision Impairment for Children (IVI-C), and PedsQL V 4.0.ResultsAll scores are markedly reduced: median (interquartile range (IQR)) CVAQC score -1.42 (-2.28 to -0.03), mean (SD) IVI-C score 65.67 (16.91), median (IQR) PedsQL family impact score 75 (56.94-88.19), parent report 71.74 (51.98-88.5), self-report 76.09 (61.96-89.13). Psychosocial PedsQL subscores are lower than physical subscores. Parent-completed tools (PedsQL family and parent report) state greater impact on HR-QoL than tools completed by children/young people, particularly in teenagers. Older children/young people have higher functional visual ability scores than younger children.ConclusionsCataract has a marked a long-term impact on functional visual ability and quality of life of children and young people, with HR-QoL affected to degrees reported in children with severe congenital cardiac defects or liver transplants."," Eye (Lond) 31(6): 856-864.","UK",2017,"Sensory",null,"PedsQL-FIM","Children and Adolescents","Observational"]
[149,"Taricco, M., et al. (2014). \"Impact of adapted physical activity and therapeutic patient education on functioning and quality of life in patients with postacute strokes.\" Neurorehabil Neural Repair 28(8): 719-728.",null,"Taricco, M., et al.","Impact of adapted physical activity and therapeutic patient education on functioning and quality of life in patients with postacute strokes","OBJECTIVE: The aim of this study was to assess whether the combination of Adapted Physical Activity (APA) and Therapeutic Patient Education (TPE) improves function and quality of life in survivors of strokes. METHODS: This nonrandomized controlled study enrolled patients with mild to moderate hemiparesis referred to 2 physical medicine and rehabilitation units in Emilia-Romagna, Italy, 3 to 18 months after a single unilateral mild to moderate stroke. The experimental group (n = 126) received 16 APA sessions and 3 sessions of TPE, and the control group (n = 103) received usual care; 86.9% completed treatment. The main outcome measure was a 4-month change in gait endurance (that corresponds to 2 months after intervention in the experimental group), and secondary outcomes included the Short Physical Performance Battery, Berg Balance Scale, Barthel Index, Geriatric Depression Scale, 12-item Short-Form Health Survey, and Caregiver Strain Index. Changes in scores at 4 months were compared between groups using analysis of variance and controlling for group imbalance by means of the propensity score. RESULTS: Gait endurance, physical performance, balance, and the physical component of the quality of life score increased significantly at 4 months in the APA group and remained stable in the control group. The propensity-adjusted between-group change was significant for these scores at P < .01. CONCLUSIONS: Our results confirm that it is feasible and potentially effective to implement APA programs for elderly patients with complex clinical conditions as early as 3 months after a stroke and suggest that, when combined with TPE, the effects of a postrehabilitation APA program are relatively enduring."," Neurorehabil Neural Repair 28(8): 719-728.","Italy",2014,"Stroke",null,"CSI","Older Persons","Observational"]
[150,"Teng, J., et al. (2003). \"Costs and caregiver consequences of early supported discharge for stroke patients.\" Stroke 34(2): 528-536.",null,"Teng, J., et al.","Costs and caregiver consequences of early supported discharge for stroke patients","BACKGROUND AND PURPOSE: Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care. METHODS: We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home. RESULTS: Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group. CONCLUSIONS: Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care."," Stroke 34(2): 528-536.","Canada",2003,"Stroke",null,"CBI","Adults","RCT"]
[151,"Thomson, W. M., et al. (2014). \"Comparison of the ECOHIS and short-form P-CPQ and FIS scales.\" Health Qual Life Outcomes 12: 36.",null,"Thomson, W. M., et al.","Comparison of the ECOHIS and short-form P-CPQ and FIS scales","BACKGROUND: The development of short-form versions of child oral-health-related quality of life (OHRQoL) scales has resulted in two closely related sets of measures. We set out to compare the properties and responsiveness of the Early Childhood Oral Health Impact Scale (ECOHIS--both \"child\" and \"family\" versions) and short-form Parental-Caregiver Perceptions Questionnaire (P-CPQ) and the Family Impact Scale (FIS) measures among New Zealand children with early childhood caries who underwent treatment under general anaesthesia (GA). METHODS: Secondary analysis of data from pretest/post-test clinical studies of consecutive clinical convenience samples undertaken in Wellington in 2005 and Auckland in 2010/11, with cross-sectional analyses using the former, and longitudinal analyses using the latter. RESULTS: Cronbach's alpha values for the ECOHIS-Child, P-CPQ-16 and P-CPQ-8 were 0.80, 0.88 and 0.80 respectively, and 0.83 and 0.68 (respectively) for the FIS-8 and the ECOHIS-Family. All scales showed acceptable cross-sectional construct validity, although that of the ECOHIS-Family was not as marked as that observed with the FIS-8. Responsiveness was acceptable, with the three child-focused measures showing similar effect sizes. The two family-focused measures were also similar. CONCLUSIONS: The ECOHIS-Child and the P-CPQ scales are very similar in their properties, but the ECOHIS-Family falls short of the FIS-8 in some important ways. The ECOHIS scales may be better deployed in epidemiological survey work rather than in health services research, whereas the P-CPQ-8, P-CPQ-16 and the FIS-8 seem to be well suited for the latter (particularly with children suffering from severe caries), but their epidemiological utility remains to be demonstrated."," Health Qual Life Outcomes 12: 36.","New Zealand",2014,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation"]
[152,"Toye, C., et al. (2015). \"Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital.\" BMC Geriatr 15: 70.",null,"Toye, C., et al.","Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital","BACKGROUND: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation. METHODS/DESIGN: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences. DISCUSSION: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support. TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 ."," BMC Geriatr 15: 70.","Australia",2015,"Frailty",null,"PCS","Older Persons","Protocol"]
[153,"Turton, A. J., et al. (2013). \"Home-based reach-to-grasp training for people after stroke: study protocol for a feasibility randomized controlled trial.\" Trials 14: 109.",null,"Turton, A. J., et al.","Home-based reach-to-grasp training for people after stroke: study protocol for a feasibility randomized controlled trial","BACKGROUND: This feasibility study is intended to assess the acceptability of home-based task-specific reach-to-grasp (RTG) training for people with stroke, and to gather data to inform recruitment, retention, and sample size for a definitive randomized controlled trial. METHODS/DESIGN: This is to be a randomized controlled feasibility trial recruiting 50 individuals with upper-limb motor impairment after stroke. Participants will be recruited after discharge from hospital and up to 12 months post-stroke from hospital stroke services and community therapy-provider services. Participants will be assessed at baseline, and then electronically randomized and allocated to group by minimization, based on the time post-stroke and extent of upper-limb impairment. The intervention group will receive 14 training sessions, each 1 hour long, with a physiotherapist over 6 weeks and will be encouraged to practice independently for 1 hour/day to give a total of 56 hours of training time per participant. Participants allocated to the control group will receive arm therapy in accordance with usual care. Participants will be measured at 7 weeks post-randomization, and followed-up at 3 and 6 months post-randomization. Primary outcome measures for assessment of arm function are the Action Research Arm Test (ARAT) and Wolf Motor Function Test (WMFT). Secondary measures are the Motor Activity Log, Stroke Impact Scale, Carer Strain Index, and health and social care resource use. All assessments will be conducted by a trained assessor blinded to treatment allocation. Recruitment, adherence, withdrawals, adverse events (AEs), and completeness of data will be recorded and reported. DISCUSSION: This study will determine the acceptability of the intervention, the characteristics of the population recruited, recruitment and retention rates, descriptive statistics of outcomes, and incidence of AEs. It will provide the information needed for planning a definitive trial to test home-based RTG training. TRIAL REGISTRATION ISRCTN: ISRCTN56716589."," Trials 14: 109.","UK",2013,"Stroke",null,"CSI","Adults","Protocol"]
[154,"Unwin, G. and S. Deb (2014). \"Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties.\" Res Dev Disabil 35(10): 2329-2340.",null,"Unwin, G. and S. Deb","Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties","We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p</=0.01 and QoL: r=-0.2; p</=0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p</=0.01 and QoL: r=-0.02; p</=0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties."," Res Dev Disabil 35(10): 2329-2340.","UK",2014,"Developmental",null,"CC-QOL,CUBS","Adults","Validation"]
[155,"Utens, C. M., et al. (2014). \"Informal caregiver strain, preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: results of a randomised controlled trial.\" Int J Nurs Stud 51(8): 1093-1102.",null,"Utens, C. M., et al.","Informal caregiver strain, preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: results of a randomised controlled trial","BACKGROUND: Informal caregivers play an important role in hospital-at-home schemes. However they may increase their burden, especially chronic diseases, like COPD. In the absence of clear differences in effectiveness and cost-effectiveness between hospital-at-home and usual hospital care, informal caregiver preferences play an important role. This study investigated informal caregiver strain, satisfaction and preferences for place of treatment with a community-based hospital-at-homes scheme for COPD exacerbations. METHOD: The study was part of a larger randomised controlled trial. By randomisation, patients were allocated to usual hospital care or hospital-at-home, which included discharge at day 4 of admission, followed by home treatment with homes visits by community nurses until day 7 of treatment. Patients allocated to usual hospital care received care as usual in the hospital and were discharged at day 7. Patients were asked if they had an informal caregiver and who this was. Patients and their caregivers were followed for 90 days. Informal caregiver strain was assessed with the caregiver strain index. Satisfaction and preference were assessed using questionnaires. All measurements were performed at the end of the 7-day treatment and the end of the 90-days follow-up. FINDINGS: Of the 139 patients, 124 had an informal caregiver, of whom three-quarter was the patients' spouse. There was no significant difference in caregiver strain between hospital-at-home and usual hospital care at both time points (mean difference at T+4 days 0.47 95% CI -0.96 to 1.91, p=0.514; mean difference at T+90 days 0.36 95% CI -1.85 to 1.35, p=0.634). At the end of the 7-day treatment, 33% (N=15) of caregivers of patients allocated to hospital treatment and 71% (N=37) of caregivers of patients allocated to home treatment preferred home treatment, if they could choose. Caregivers were satisfied with the treatment the patient received within hospital-at-home. CONCLUSION: There were no differences in caregiver strain between the community-based hospital-at-home scheme and usual hospital care. Most caregivers were satisfied with the treatment. In addition to other outcomes, our results support the wider implementation of hospital-at-home for COPD exacerbations."," Int J Nurs Stud 51(8): 1093-1102.","Netherlands",2014,"Respiratory",null,"CSI","Adults","RCT"]
[156,"van der Marck, M. A., et al. (2013). \"Effectiveness of multidisciplinary care for Parkinson's disease: a randomized, controlled trial.\" Mov Disord 28(5): 605-611.",null,"van der Marck, M. A., et al.","Effectiveness of multidisciplinary care for Parkinson's disease: a randomized, controlled trial","Multidisciplinary care is considered an optimal model to manage Parkinson's disease (PD), but supporting evidence is limited. We performed a randomized, controlled trial (RCT) to establish whether a multidisciplinary/specialist team offers better outcomes, compared to stand-alone care from a general neurologist. Patients with PD were randomly allocated to an intervention group (care from a movement disorders specialist, PD nurses, and social worker) or a control group (care from general neurologists). Both interventions lasted 8 months. Clinicians and researchers were blinded for group allocation. The primary outcome was the change in quality of life (Parkinson's Disease Questionnaire; PDQ-39) from baseline to 8 months. Other outcomes were the UPDRS, depression (Montgomery-Asberg Depression Scale; MADRS), psychosocial functioning (Scales for Outcomes in Parkinson's disease-Psychosocial; SCOPA-PS), and caregiver strain (Caregiver Strain Index; CSI). Group differences were analyzed using analysis of covariance adjusted for baseline values and presence of response fluctuations. A total of 122 patients were randomized and 100 completed the study (intervention, n = 51; control, n = 49). Compared to controls, the intervention group improved significantly on PDQ-39 (difference, 3.4; 95% confidence interval [CI]: 0.5-6.2) and UPDRS motor scores (4.1; 95% CI: 0.8-7.3). UPDRS total score (5.6; 95% CI: 0.9-10.3), MADRS (3.7; 95% CI: 1.4-5.9), and SCOPA-PS (2.1; 95% CI: 0.5-3.7) also improved significantly. This RCT gives credence to a multidisciplinary/specialist team approach. We interpret these positive findings cautiously because of the limitations in study design. Further research is required to assess teams involving additional disciplines and to evaluate cost-effectiveness of integrated approaches. (c) 2012 Movement Disorder Society."," Mov Disord 28(5): 605-611.","Netherlands",2013,"Parkinson's",null,"CSI","Adults","RCT"]
[157,"van Exel, N. J., et al. (2004). \"Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden.\" Clin Rehabil 18(2): 203-214.",null,"van Exel, N. J., et al.","Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden","OBJECTIVE: To compare the feasibility, convergent and clinical validity of three commonly used burden scales: Caregiver Strain Index (CSI), Caregiver Reaction Assessment (CRA) and Sense of Competence Questionnaire (SCQ), with a self-developed single question on self-rated burden (SRB). SUBJECTS: Stroke patients receiving support from an informal caregiver (n = 148) and their caregivers were followed up to six months after stroke. INTERVENTION: Feasibility was assessed with several measures of missing values. Convergent validity was assessed on the basis of the correlation patterns between the burden scales, and clinical validity through evaluation of expected associations between levels of burden and explanatory patients' and caregivers' characteristics. RESULTS: Missing values were less often observed on CSI and SRB than SCQ and CRA. Significant correlation coefficients (p < 0.05) could be demonstrated between all burden scales, except for one subscale of CRA. Evidence for clinical validity was strongest for CSI and SRB, based on associations between higher burden scores and patients' disability, and patients' and caregivers' poor level of health-related quality of life (all p < 0.05). CONCLUSIONS: A concise and simple measure would facilitate early detection of caregivers at risk in clinical practice and research. CSI and SRB are more feasible and at least as valid instruments for assessment of caregiver burden in stroke than the longer and more complex SCQ and CRA. SRB could be used for quick screening of caregivers at risk. CSI is indicated for further diagnosis of the burden of informal caregivers."," Clin Rehabil 18(2): 203-214.","Netherlands",2004,"Stroke",null,"CRA,CSI,SRB,SCQ","Adults","Validation"]
[158,"van Groenestijn, A. C., et al. (2015). \"Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial.\" Amyotroph Lateral Scler Frontotemporal Degener 16(5-6): 309-315.",null,"van Groenestijn, A. C., et al.","Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial","Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality of life (QoL) in psychologically distressed patients with ALS and their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five to 10 CBT sessions plus usual care (UC) or UC alone. Outcome measures were SF-36 Mental Component Summary (MCS), ALSAQ-40 Emotional Functioning (EF), Hospital Anxiety and Depression Scale (HADS) and Caregiver Strain Index (CSI). Assessments took place at baseline, four, seven and 10 months. The steering committee decided to stop the trial prematurely and analyse the data due to: 1) slow recruitment (15 patients over 42 months); and 2) the low demand for joint patient-carer CBT sessions. Caregivers, however, expressed an unanticipated demand for individual psychological support. Patients' ALSAQ-40-EF and caregivers' SF-36-MCS were significantly better in CBT than UC (p < 0.05). CSI was significantly lower in the CBT than the UC (p < 0.05). In conclusion, CBT might be beneficial to patients and caregivers. The stringent eligibility criteria limited participation rate and consequently the generalizability of results. Future studies should further examine the impact of CBT interventions for patients with ALS and their caregivers."," Amyotroph Lateral Scler Frontotemporal Degener 16(5-6): 309-315.","Netherlands",2015,"ALS",null,"CSI","Unspecified","RCT"]
[159,"Vieta, E., et al. (2011). \"Clinical management and burden of bipolar disorder: a multinational longitudinal study (WAVE-bd study).\" BMC Psychiatry 11: 58.",null,"Vieta, E., et al.","Clinical management and burden of bipolar disorder: a multinational longitudinal study (WAVE-bd study)","BACKGROUND: Studies in bipolar disorder (BD) to date are limited in their ability to provide a whole-disease perspective--their scope has generally been confined to a single disease phase and/or a specific treatment. Moreover, most clinical trials have focused on the manic phase of disease, and not on depression, which is associated with the greatest disease burden. There are few longitudinal studies covering both types of patients with BD (I and II) and the whole course of the disease, regardless of patients' symptomatology. Therefore, the Wide AmbispectiVE study of the clinical management and burden of Bipolar Disorder (WAVE-bd) (NCT01062607) aims to provide reliable information on the management of patients with BD in daily clinical practice. It also seeks to determine factors influencing clinical outcomes and resource use in relation to the management of BD. METHODS: WAVE-bd is a multinational, multicentre, non-interventional, longitudinal study. Approximately 3000 patients diagnosed with BD type I or II with at least one mood event in the preceding 12 months were recruited at centres in Austria, Belgium, Brazil, France, Germany, Portugal, Romania, Turkey, Ukraine and Venezuela. Site selection methodology aimed to provide a balanced cross-section of patients cared for by different types of providers of medical aid (e.g. academic hospitals, private practices) in each country. Target recruitment percentages were derived either from scientific publications or from expert panels in each participating country. The minimum follow-up period will be 12 months, with a maximum of 27 months, taking into account the retrospective and the prospective parts of the study. Data on demographics, diagnosis, medical history, clinical management, clinical and functional outcomes (CGI-BP and FAST scales), adherence to treatment (DAI-10 scale and Medication Possession Ratio), quality of life (EQ-5D scale), healthcare resources, and caregiver burden (BAS scale) will be collected. Descriptive analysis with common statistics will be performed. DISCUSSION: This study will provide detailed descriptions of the management of BD in different countries, particularly in terms of clinical outcomes and resources used. Thus, it should provide psychiatrists with reliable and up-to-date information about those factors associated with different management patterns of BD. TRIAL REGISTRATION NO: ClinicalTrials.gov: NCT01062607."," BMC Psychiatry 11: 58.","Austria,Belgium,Brazil,France,Germany,Portugal,Romania,Turkey,Ukraine,Venezuela",2011,"Psychiatric",null,"BAS","Unspecified","Protocol"]
[160,"Vilalta-Franch, J., et al. (2013). \"Psychosis of Alzheimer disease: prevalence, incidence, persistence, risk factors, and mortality.\" Am J Geriatr Psychiatry 21(11): 1135-1143.",null,"Vilalta-Franch, J., et al.","Psychosis of Alzheimer disease: prevalence, incidence, persistence, risk factors, and mortality","OBJECTIVES: To establish the prevalence, incidence, persistence, risk factors, and mortality risk increase of psychosis of Alzheimer disease (PoAD) in a clinical sample. DESIGN, PARTICIPANTS, AND MEASUREMENTS: Cross-sectional, observational study of 491 patients with probable AD who, at baseline visit, were evaluated with the Cambridge Examination for Mental Disorders of the Elderly, the Neuropsychiatric Inventory-10, the Rapid Disability Rating Scale-2, and the Zarit Burden Interview. All participants were reevaluated at 6, 12, 18, and 24 months. PoAD diagnoses were made using specific criteria. RESULTS: PoAD prevalence was 7.3%, and the cumulative incidence at 6, 12, 18, and 24 months was 5.8%, 10.6%, 13.5%, and 15.1%, respectively. After 1 year, psychotic symptoms persisted in 68.7% of the patients with initial PoAD. At baseline, patients with PoAD scored lower in the Cambridge Cognitive Examination and Mini-Mental State Examination and higher in the Rapid Disability Rating Scale-2 and Zarit Burden Interview tests. Both low scores in the Cambridge Cognitive Examination subscale of learning memory (hazard ratio [HR] = 0.874; 95% CI: 0.788-0.969; Wald chi2 = 6.515; df = 1) and perception (HR = 0.743; 95% CI: 0.610-0.904; Wald chi2 = 8.778; df = 1), and high scores in expressive language (HR = 1.179; 95% CI: 1.024-1.358; Wald chi2 = 5.261; df = 1) and calculation skills (HR = 1.763; 95% CI: 1.067-2.913; Wald chi2 = 4.905; df = 1) were found to be associated with PoAD. PoAD leads to a faster functional impairment, and it increases mortality risk (HR = 2.191; 95% CI: 1.136-4.228; Wald chi2 = 5.471; df = 1) after controlling for age, gender, cognitive and functional disability, general health status, and antipsychotic treatment. CONCLUSIONS: PoAD seems to define a phenotype of AD of greater severity, with worsened functional progression and increased mortality risk."," Am J Geriatr Psychiatry 21(11): 1135-1143.","Spain",2013,"Dementia",null,"Zarit","Older Persons","Observational"]
[161,"Viwattanakulvanid, P., et al. (2014). \"The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions.\" J Neural Transm (Vienna) 121 Suppl 1: S15-24.",null,"Viwattanakulvanid, P., et al.","The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions","Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. Caregiver self-assessments were performed with Hospital Anxiety and Depression Scale (HADS) and Zarit Caregiver Burden Interview (ZCBI). Patient self-assessments were performed with Modified Parkinson's Disease Sleep Scale (MPDSS), Nocturnal Akinesia Dystonia and Cramp Score (NADCS), HADS and Parkinson's Disease Quality of Life Questionnaire (PDQ-8). Most of the caregivers were employed women, and the majority had been permanently taking care of the patient for 6.8 +/- 5.4 years. The study found that the ZCBI mean score of the caregivers significantly worsened as patients became more dependent (HY: 4-5, p = 0.036), and the mean ZCBI score of spousal caregivers (19.4; SD 15.5) was significantly higher than that of the offspring group (11.7; SD 7.9) (p = 0.008). Disease duration (r = 0.22), NADCS (r = 0.38), MPDSS (r = -0.36), PDQ-8 SI (r = 0.39) and HADS (total, anxiety and depression) scores (r = 0.46-0.49), and HADS (total, anxiety and depression scores (r = 0.37-0.52), had significant negative effect on caregivers' burden. Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD."," J Neural Transm (Vienna) 121 Suppl 1: S15-24.","Thailand",2014,"Parkinson's",null,"Zarit","Adults","Observational"]
[162,"Voisin, T., et al. (2010). \"Predictive factors of hospitalizations in Alzheimer's disease: a two-year prospective study in 686 patients of the REAL.FR study.\" J Nutr Health Aging 14(4): 288-291.",null,"Voisin, T., et al.","Predictive factors of hospitalizations in Alzheimer's disease: a two-year prospective study in 686 patients of the REAL.FR study","BACKGROUND: During the course of the Alzheimer's disease (AD), many patients need to be hospitalized either due to the direct consequences of the disease itself, or due to associated diseases or life event. The objective of the present study was to determine predictive factors for hospitalisation in AD patients. METHODS: Six hundred eighty-six AD patients from the French Network on AD (REAL-FR) were follow up and assessed every 6 months for 2 years. During follow-up, all events occurring between two visits, in particular hospital admissions were carefully recorded. RESULTS: Annual incidences for hospitalizations were 26.13% (95% CI, 22.52 to 29.74). After two years, 202 subjects were hospitalized for 296 hospitalizations. Three variables were found to be significant predictors of hospitalisations in the multivariate regression model: dependency for ADL (RR=0.81; 95% CI: 0.70-0.95, p=0.0091), the drug use (use of four or more drugs) (RR=1.83; 95% CI: 1.31-2.58, p=0.0005) and the NPI score (RR=1.011; 95% CI: 1.001-1.022, p=0.0427). For hospitalizations due to the direct consequences of the disease itself, three variables were found to be significant predictors of hospitalisations: dependency for ADL (RR=0.69; 95% CI: 0.53-0.88, p=0.0033), the caregiver burden Zarit score (RR=1.03; 95% CI: 1.01-1.05, p=0.0079) and the NPI score (RR=1.07; 95% CI: 1.03-1.12, p=0.0007). CONCLUSIONS: Intervention to support patients and caregivers to manage loss of ADL may be a practical approach to reduce hospitalisation. Prevention of drug use or optimal treatment of associated diseases in AD seem to be also a challenge to decrease the rates of hospitalization or readmission, and the costs of providing care."," J Nutr Health Aging 14(4): 288-291.","France",2010,"Dementia",null,"Zarit","Older Persons","Observational"]
[163,"Wade, D. T., et al. (2003). \"Multidisciplinary rehabilitation for people with Parkinson's disease: a randomised controlled study.\" J Neurol Neurosurg Psychiatry 74(2): 158-162.",null,"Wade, D. T., et al.","Multidisciplinary rehabilitation for people with Parkinson's disease: a randomised controlled study","OBJECTIVE: To determine whether a programme of multidisciplinary rehabilitation and group support achieves sustained benefit for people with Parkinson's disease or their carers. METHODS: The study was a randomised controlled crossover trial comparing patients and carers who had received rehabilitation four months before assessment with those who had not. Patients were recruited from a neurology clinic, attended a day hospital from home weekly for six weeks using private car or hospital transport, and received group educational activities and individual rehabilitation from a multidisciplinary team. Patients were assessed at entry and at six months using a 25 item self assessment Parkinson's disease disability questionnaire, Euroqol-5d, SF-36, PDQ-39, hospital anxiety and depression scale, and timed stand-walk-sit test. Carers were assessed using the carer strain index and Euroqol-5d. RESULTS: 144 people with Parkinson's disease without severe cognitive losses and able to travel to hospital were registered (seven were duplicate registrations); 94 had assessments at baseline and six months. Repeated measures analysis of variance comparing patients at the 24 week crossover point showed that those receiving rehabilitation had a trend towards better stand-walk-sit score (p = 0.093) and worse general and mental health (p = 0.002, p = 0.019). Carers of treated patients had a trend towards more strain (p = 0.086). Analysis comparing patients before and six months after treatment showed worsening in disability, quality of life, and carer strain. CONCLUSIONS: Patients with Parkinson's disease decline significantly over six months, but a short spell of multidisciplinary rehabilitation may improve mobility. Follow up treatments may be needed to maintain any benefit."," J Neurol Neurosurg Psychiatry 74(2): 158-162.","UK",2003,"Parkinson's",null,"CSI","Adults","RCT"]
[164,"Wijesinghe, C. J., et al. (2013). \"The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale.\" Ceylon Med J 58(4): 162-167.",null,"Wijesinghe, C. J., et al.","The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale","OBJECTIVES: To develop a valid and reliable instrument to assess caregiver burden in caregivers of children with cerebral palsy (CP). METHODS: A self-administered, multidimensional instrument--Caregiver Difficulties Scale (CDS)--was developed using a combined qualitative-quantitative approach. Items for the preliminary draft were selected from existing caregiver assessment instruments by consensus of experts or key informant interviews with caregivers and service providers of children with CP. Standard item reduction techniques based on responses of 50 caregivers were used to develop the 25 item final draft of CDS. Multidimensionality of CDS was established by exploratory factor analysis, using responses of 125 caregivers. Construct validity of CDS was confirmed by assessing correlations between CDS score and two other constructs: 'Caregiver quality of life' and 'Severity of disease in the care recipient' in a sample of 90 caregivers. Internal consistency and reliability of CDS were assessed using Cronbach's alpha and test/retest reliability. RESULTS: A new instrument (CDS) was developed with four subscales measuring caregiver's concerns for child, impact on self, support for caregiving and social and economic strain. Face validity, content validity and consensual validity of CDS was established through the process of item generation. Caregiver quality of life and severity of disease in care recipient demonstrated significant moderate to high correlations (r >/= 0.3) with scores of CDS, confirming construct validity. Both internal consistency and reliability of CDS were satisfactory. CONCLUSIONS: CDS is a valid and reliable instrument to assess caregiver burden among caregivers of children with cerebral palsy in Sri Lanka."," Ceylon Med J 58(4): 162-167.","Sri Lanka",2013,"Neurology",null,"CDfS","Children and Adolescents","Validation"]
[165,"Wilkinson, P. R., et al. (1997). \"A long-term follow-up of stroke patients.\" Stroke 28(3): 507-512.",null,"Wilkinson, P. R., et al.","A long-term follow-up of stroke patients","BACKGROUND AND PURPOSE: Two hundred ninety-one residents of southeast London, younger than 75 years, suffered their first stroke in 1989/1990. The objectives of this study were to determine the long-term outcome of this cohort of stroke patients in terms of impairment, disability, handicap, and quality of life and their use of services and prevention measures subsequent to their stroke. METHODS: The survivors and their identified caregivers were traced and completed a structured interview questionnaire that included the Barthel Index, modified Rankin Scale, Hospital Anxiety and Depression Scale (HAD), Mini-Mental State Examination, Frenchay Activities Index, and Caregiver Strain Index. RESULTS: One hundred twenty-three people (42%) were alive, of whom 106 were interviewed. The mean interval between the stroke and the long-term follow-up was 4.9 years. Thirty-one of the survivors (29%) were severely or moderately disabled, 39 (37%) were mildly disabled, and 36 (34%) were functionally independent. Of the 96 people who completed the HAD, 35 (36%) had scores suggesting that they were depressed or had borderline depression. The most likely nontherapy services to have been provided were chiropody and district nursing. Five people had received respite care. Of the 104 subjects for whom information about their home was available, 53 (51%) had had an adaptation. Seventy-five people (71%) had an aid or appliance. Sixty-five people (61%) were on aspirin, and an additional 14 (13%) were on warfarin. Fifty subjects (47%) identified a main caregiver. No one with a moderate or more severe disability was living at home without an identified caregiver. CONCLUSIONS: The levels of both health and social service provision are likely to be inadequate for this population. The use of prevention measures is encouraging. There is a clear need for a coordinated policy to guide assessment and management across sectors."," Stroke 28(3): 507-512.","UK",1997,"Stroke",null,"CSI","Adults","Observational"]
[166,"Wilkinson, P. R., et al. (1997). \"Longer term quality of life and outcome in stroke patients: is the Barthel index alone an adequate measure of outcome?\" Qual Health Care 6(3): 125-130.",null,"Wilkinson, P. R., et al.","Longer term quality of life and outcome in stroke patients: is the Barthel index alone an adequate measure of outcome?","OBJECTIVES: To consider whether the Barthel Index alone provides sufficient information about the long term outcome of stroke. DESIGN: Cross sectional follow up study with a structured interview questionnaire and measures of impairment, disability, handicap, and general health. The scales used were the hospital anxiety and depression scale, mini mental state examination, Barthel index, modified Rankin scale, London handicap scale, Frenchay activities index, SF36, Nottingham health profile, life satisfaction index, and the caregiver strain index. SETTING: South east London. SUBJECTS: People, and their identified carers, resident in south east London in 1989-90 when they had their first in a life-time stroke aged under 75 years. INTERVENTIONS: Observational study. MAIN OUTCOME MEASURES: Comparison and correlation of the individual Barthel index scores with the scores on other outcome measures. RESULTS: One hundred and twenty three (42%) people were known to be alive, of whom 106 (86%) were interviewed. The median age was 71 years (range 34-79). The mean interval between the stroke and follow up was 4.9 years. The rank correlation coefficients between the Barthel and the different dimensions of the SF36 ranged from r = 0.217 (with the role emotional dimension) to r = 0.810 (with the physical functioning dimension); with the Nottingham health profile the range was r = -0.189 (with the sleep dimension, NS) to r = -0.840 (with the physical mobility dimension); with the hospital and anxiety scale depression component the coefficient was r = -0.563, with the life satisfaction index r = 0.361, with the London handicap scale r = 0.726 and with the Frenchay activities index r = 0.826. CONCLUSIONS: The place of the Barthel index as the standard outcome measure for populations of stroke patients is still justified for long term follow up, and may be a proxy for different outcome measures intended for the assessment of other domains."," Qual Health Care 6(3): 125-130.","UK",1997,"Stroke",null,"CSI","Adults","Validation"]
[167,"Yu, D. S. (2016). \"Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial.\" J Am Geriatr Soc 64(10): 2144-2148.",null,"Yu, D. S.","Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial","Family caregiving is an important form of informal care provided to frail, community-dwelling older adults. This article describes a health and social collaborative case management (HSC-CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group-based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC-CM on caregiver burden and health-related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 +/- 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16-week HSC-CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC-CM. These case managers served as liaisons for multidisciplinary efforts to provide group-based education according to caregiver needs. Family caregivers who participated in the HSC-CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36-item Short-Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well-being (p = .049). This study provides preliminary evidence indicating that client-centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full-scale study is required to validate these findings."," J Am Geriatr Soc 64(10): 2144-2148.","China",2016,"Frailty",null,"CBI","Older Persons","RCT"]
[168,"Yun, Y. H., et al. (2005). \"Economic burdens and quality of life of family caregivers of cancer patients.\" Oncology 68(2-3): 107-114.",null,"Yun, Y. H., et al.","Economic burdens and quality of life of family caregivers of cancer patients","OBJECTIVES: We conducted this study to identify factors influencing the burdens cancer brings to a patient's family and to evaluate the association between the burdens and the caregiver's quality of life (QOL). METHODS: Participants were drawn from the primary family caregivers of cancer patients at 6 university hospitals and the National Cancer Center in Korea. Of the 738 eligible caregivers, 704 (95.4%) completed the questionnaire packets (Family Impact Questions and Caregiver's QOL-Cancer). RESULTS: Caregivers, who were poor (OR, 2.11; 95% CI, 1.44-3.10), whose health status was poor (OR, 1.87; 95% CI, 1.29-2.70), who were married (OR, 1.75; 95% CI, 1.12-2.72), who provided care for a long time (OR, 2.29; 95% CI, 1.59-3.28), who cared for patients with poor performance status (OR, 1.35; 95% CI, 1.00-1.82), and who paid high medical expenses (OR, 1.70; 95% CI, 1.21-2.40), were more likely to lose their family savings. In multiple regression analysis, most burden variables--including requiring caregiving assistance, major life change, inability to function normally, loss of savings, loss of income, and altered educational plans--were associated with caregiver QOL. Loss of family income, which was related to economic issues, was most strongly associated with it (16.0%). CONCLUSIONS: Our study suggests that to improve caregiver QOL, we should give priority to decreasing the economic burden that cancer places on patient's family."," Oncology 68(2-3): 107-114.","South Korea",2005,"Cancer",null,"FIS","Unspecified","Observational"]
[169,"Zahid, M. A. and J. U. Ohaeri (2010). \"Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia.\" BMC Psychiatry 10: 71.",null,"Zahid, M. A. and J. U. Ohaeri","Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia","BACKGROUND: Although the burden experienced by families of people with schizophrenia has long been recognized as one of the most important consequences of the disorder, there are no reports from the Arab world. Following the example of the five-nation European (EPSILON) study, we explored the following research question: How does the relationship between domains of caregiving (as in the Involvement Evaluation Questionnaire--IEQ-EU) and caregiver psychic distress on the one hand, and caregiver's/patient's socio-demographics, clinical features and indices of quality of care, on the other hand, compare with the pattern in the literature? METHOD: Consecutive family caregivers of outpatients with schizophrenia were interviewed with the IEQ-EU. Patients were interviewed with measures of needs for care, service satisfaction, quality of life (QOL) and psychopathology. RESULTS: There were 121 caregivers (66.1% men, aged 39.8). The IEQ domain scores (total: 46.9; tension: 13.4; supervision: 7.9; worrying: 12.9; and urging: 16.4) were in the middle of the range for the EU data. In regression analyses, higher burden subscale scores were variously associated with caregiver lower level of education, patient's female gender and younger age, as well as patient's lower subjective QOL and needs for hospital care, and not involving the patient in outdoor activities. Disruptive behavior was the greatest determinant of global rating of burden. CONCLUSION: Our results indicate that, despite differences in service set-up and culture, the IEQ-EU can be used in Kuwait as it has been used in the western world, to describe the pattern of scores on the dimensions of caregiving. Differences with the international data reflect peculiarities of culture and type of service. Despite generous national social welfare provisions, experience of burden was the norm and was significantly associated with patient's disruptive behavior. The results underscore the need for provision of community-based programs and continued intervention with the families in order to improve the quality of care."," BMC Psychiatry 10: 71.","Kuwait",2010,"Psychiatric",null,"IEQ","Unspecified","Observational"]

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["BCOS","Bakas Caregiving Outcomes Scale"]
["BIC","Burden Index of Caregivers"]
["CAS","Caregiver Activity Survey"]
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["copBI","Copenhagen Burnout Inventory"]
["CPBS","Cousineau Perceived Burden Scale"]
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["CQLI","Caregiver Quality of Life Index"]
["C-QOL","Carer Quality of Life"]
["CRA","Caregiver Reaction Assessment"]
["CSES","Caregiving Self-Efficacy Scale"]
["CSI","Carer Strain Index"]
["CUBS","Caregiver's Uplift and Burden Scale"]
["DIOC","Disease Impact On Caregiver"]
["FAMQOL","Family Caregiver Quality of Life"]
["FAQ","Family APGAR Questionnaire"]
["FIS","Family Impact Scale"]
["FNQ","Family Needs Questionnaire"]
["FQLS","Family Quality of Life Scale"]
["FSS","Duke-UNC Functional Social Support Questionnaire"]
["GHHQ","General Health and History Questionnaire"]
["GHQ-30","General Health Questionnaire"]
["HIS","Hospitalisation Impact Scale"]
["IEQ","Involvement Evaluation Questionnaire"]
["IOFS","Impact On Family Scale"]
["Katz","Katz Adjustment Scale"]
["MB-CBS","Montgomery-Borgatta Caregiver Burden Scale"]
["MSPSS","Multidimensional Scale of Perceived Social Support"]
["P-CPQ","Parental-Caregiver Perception Questionnaire"]
["PCS","Preparedness for Caregiver Scale"]
["PedsQL-FIM","Pediatric Quality of Life Family Impact Module"]
["QLIPCIC","Ulm Quality of Life Inventory for Parents of Chronically Ill Children"]
["QOL-FV","Quality of Life - Family Version"]
["RCT","Randomised Controlled Trial"]
["SCQ","Sence of Competence Questionnaire"]
["SFS","Social Functioning Scale"]
["SLR","Systematic Literature Review"]
["SRB","Self-Rated Burden"]
["SSS","Social Support Scale"]
["VAS","Visual Analogue Scale"]
["WPCQ","Wessex Patient Carer Questionnaire"]
["Zarit","Zarit Caregiver Burden Interview"]

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[169,"Full citation","DOI","Authors","Title","Abstract","Citation","Locations","Year","Diseases","Interventions","PROtools","Subpopulations","Study types","Study methodologies","LocationsTags","SubpopulationsTags","DiseaseTags","InterventionsTags","StudytypesTags","StudyMethodologyTags","PROtoolTags","DateBand","C1","C2","C3","C4","C5"]
[1,"Agou,S.,et al. (2008). \"Is the child oral health quality of life questionnaire sensitive to change in the context of orthodontic treatment? A brief communication.\" J Public Health Dent 68(4): 246-248.",null,"Agou,S.,et al.","Is the child oral health quality of life questionnaire sensitive to change in the context of orthodontic treatment? A brief communication","OBJECTIVE: This study aimed to assess the ability of the Child Oral Health Quality of Life Questionnaire (COHQoL) to detect change following provision of orthodontic treatment. METHODS: Children were recruited from an orthodontic clinic just prior to starting orthodontic treatment. They completed a copy of the Child Perception Questionnaire,while their parents completed a copy of the Parents Perception Questionnaire and the Family Impact Scale. Normative outcomes were assessed using the Dental Aesthetic Index (DAI) and the Peer Assessment Rating (PAR) index. Change scores and effect sizes were calculated for all scales. RESULTS: Complete data were collected for 45 children and 26 parents. The mean age was 12.6 years (standard deviation = 1.4). There were significant pre-/posttreatment changes in DAI and PAR scores and significant changes in scores on all three questionnaires (P < 0.05). Effect sizes for the latter were moderate. Global transition judgments also confirmed pre-/posttreatment improvements in oral health and wellbeing. CONCLUSION: The results provide preliminary evidence of the sensitivity to change of the COHQoL questionnaires when used with children receiving orthodontic treatment. However,the study needs to be repeated in different treatment settings and with a larger sample size in order to confirm the utility of the measure."," J Public Health Dent 68(4): 246-248.","Canada",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation",null,"Canada","Children and Adolescents","Oral Health",null,"Validation",null,"FIS,P-CPQ","2005:2009"]
[2,"Aguglia,E.,et al. (2004). \"Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy.\" Am J Alzheimers Dis Other Demen 19(4): 248-252.",null,"Aguglia,E.,et al.","Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy","In Italy,the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average,three-quarters of the caregiver's day is devoted to the patient,a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI),to quantify the caregiving workload and the Brief Symptom Inventory (BSI),to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman,approximately 60 years old. The majority of caregivers are spouses,followed by children. In general,these caregivers work at home,are housewives or retired,and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are,the greater amount of care and supervision they require,leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease,patient care tasks take up nearly all of the caregiver's free time,leaving them only about two hours per week for themselves or their friends. In conclusion,the management of dementia patients places a particular burden on the caregiver and involves several economic and social costs. The burden becomes heavier as the disease progresses,since the increase of cognitive disorders and the resulting reduction of independence in daily life,together with the onset of behavioral symptoms,heighten the caregiver's distress,anxiety,and depression. Establishing a network of community services able to alleviate the burden on families is therefore a priority. Parallels can be drawn between the stresses documented for American caregivers and their Italian counterparts."," Am J Alzheimers Dis Other Demen 19(4): 248-252.","Italy",2004,"Dementia",null,"CBI","Children and Adolescents,Older Persons","Observational",null,"Italy","Children and Adolescents,Older Persons","Dementia",null,"Observational",null,"CBI","2000:2004"]
[3,"Al-Janabi,H.,et al. (2008). \"What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.\" Soc Sci Med 67(1): 111-121.",null,"Al-Janabi,H.,et al.","What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up","Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care,particularly to older people. As a result,careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people,to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on,organisational assistance,social support,activities,control,and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care,rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure,it may offer a promising way of incorporating the impact on carers in economic evaluations."," Soc Sci Med 67(1): 111-121.","UK",2008,"Frailty",null,"CExS","Older Persons","Validation",null,"UK","Older Persons","Frailty",null,"Validation",null,"CExS","2005:2009"]
[4,"Al-Janabi,H.,et al. (2011). \"Estimation of a preference-based carer experience scale.\" Med Decis Making 31(3): 458-468.",null,"Al-Janabi,H.,et al.","Estimation of a preference-based carer experience scale","BACKGROUND: There is growing interest in incorporating the effects of interventions on unpaid carers in economic evaluation. Current methods focus on using health measures (which neglect important aspects of care-related quality of life) or using carer-specific sum score measures (which are not preference based). OBJECTIVE: To estimate preference-based index values for a profile measure of the caring experience (the Carer Experience Scale). METHODS: Eighteen profiles from the Carer Experience Scale were included in a best-worst scaling experiment. In each profile,respondents were asked to pick the best and worst attribute level from the profiles. The choice task was completed in a postal questionnaire by 162 unpaid carers of older people from 5 geographical locations in the United Kingdom. Logistic regression was used to estimate utility weights for the attribute levels of the Carer Experience Scale. Alternative modeling assumptions were employed to determine the stability of the parameter estimates. These parameter estimates were rescaled so that the profile index values for the Carer Experience Scale lay on a 0-to-100 scale. RESULTS: The results indicate that low levels of \"activities\" and \"getting on\" result in larger decrements to utility than other attributes of the caring experience. In general,greater value is placed on differences between the bottom and middle levels of attributes than between the middle and top levels. Alternative modeling approaches had a negligible effect on the index values. CONCLUSION: The index values reported in this study offer a new preference-based approach to incorporating the effects on carers in economic evaluation,focusing on care (rather than health)-related quality of life."," Med Decis Making 31(3): 458-468.","UK",2011,"Unspecified",null,"CExS","Older Persons","Validation",null,"UK","Older Persons","Unspecified",null,"Validation",null,"CExS","2010:2014"]
[5,"Alvarez-Ude,F.,et al. (2004). \"Health-related quality of life of family caregivers of dialysis patients.\" J Nephrol 17(6): 841-850.",null,"Alvarez-Ude,F.,et al.","Health-related quality of life of family caregivers of dialysis patients","BACKGROUND: This study aimed to evaluate the health-related quality of life (HRQOL) and burden on family caregivers of chronic dialysis patients and to analyze which factors were associated with it. METHODS: A cross-sectional multicentric study was carried out with 221 patient/caregiver pairs. General population Short Form 36 (SF-36) norms were used to estimate gender and age standardized physical component summary (PCS) and mental component summary (MCS) scores. The Duke-UNC Functional Social Support Questionnaire (FSS),the Zarit Burden Interview (ZBI),and sociodemographic and clinical data were also collected. RESULTS: The PCS and MCS of caregivers were slightly worse than that of the Spanish population. Multiple regression analysis showed that: (1) lower PCS was associated with younger age and higher ZBI of the caregiver (R2=0.15); (2) lower MCS was associated with higher ZBI and lower FSS of the caregiver,and lower MCS of the patient (R2=0.29); (3) higher ZBI was associated with lower FSS,PCS and MCS of the caregiver,and to older age and lower PCS and MCS of the patient (R2=0.49). Of caregivers 28.3% had a MCS < or = 42; logistic regression analysis showed that a MCS < or = 42 was associated to higher ZBI and lower FSS scores (p<0.001). CONCLUSIONS: The HRQOL of dialysis patient family caregivers is slightly worse than that of the Spanish population of the same age and gender. Younger family members,who are the primary carers of older dialysis patients with poor HRQOL,experienced a higher burden,had a worse HRQOL and had a higher risk of clinical depression; this was worse if low social support was perceived."," J Nephrol 17(6): 841-850.","Spain",2004,"Renal",null,"Zarit,FSS","Unspecified","Observational",null,"Spain","Unspecified","Renal",null,"Observational",null,"Zarit,FSS","2000:2004"]
[6,"Amieva,H.,et al. (2016). \"Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial.\" Int Psychogeriatr 28(5): 707-717.",null,"Amieva,H.,et al.","Group and individual cognitive therapies in Alzheimer's disease: the ETNA3 randomized trial","BACKGROUND: Although non-drug interventions are widely used in patients with Alzheimer's disease,few large scale randomized trials involving a long-term intervention and several cognitive-oriented approaches have been carried out. ETNA3 trial compares the effect of cognitive training,reminiscence therapy,and an individualized cognitive rehabilitation program in Alzheimer's disease to usual care. METHODS: This is a multicenter (40 French clinical sites) randomized,parallel-group trial,with a two-year follow-up comparing groups receiving standardized programs of cognitive training (group sessions),reminiscence therapy (group sessions),individualized cognitive rehabilitation program (individual sessions),and usual care (reference group). Six hundred fifty-three outpatients with Alzheimer's disease were recruited. The primary efficacy outcome was the rate of survival without moderately severe to severe dementia at two years. Secondary outcomes were cognitive impairment,functional disability,behavioral disturbance,apathy,quality of life,depression,caregiver's burden,and resource utilization. RESULTS: No impact on the primary efficacy measure was evidenced. For the two group interventions (i.e. cognitive training and reminiscence),none of the secondary outcomes differed from usual care. The larger effect was seen with individualized cognitive rehabilitation in which significantly lower functional disability and a six-month delay in institutionalization at two years were evidenced. CONCLUSIONS: These findings challenge current management practices of Alzheimer's patients. While cognitive-oriented group therapies have gained popularity,this trial does not show improvement for the patients. The individualized cognitive rehabilitation intervention provided clinically significant results. Individual interventions should be considered to delay institutionalization in Alzheimer's disease."," Int Psychogeriatr 28(5): 707-717.","France",2016,"Dementia",null,"Unclear","Older Persons","Observational",null,"France","Older Persons","Dementia",null,"Observational",null,"Unclear","2015:2018"]
[7,"Appleton,S.,et al. (2003). \"Sustained improvements in dyspnea and pulmonary function 3 to 5 years after lung volume reduction surgery.\" Chest 123(6): 1838-1846.",null,"Appleton,S.,et al.","Sustained improvements in dyspnea and pulmonary function 3 to 5 years after lung volume reduction surgery","OBJECTIVES: To determine long-term survival rates of patients who underwent lung volume reduction surgery (LVRS) for emphysema and the factors associated with longer survival,and to evaluate levels of perceived dyspnea and health-related quality of life (HRQL) after a follow-up period of 3 to 5.5 years. DESIGN: Retrospective observational study. SETTING: Academic medical center METHODS: Telephone and postal surveys were used to obtain patient dyspnea scores and HRQL scores. Hospital databases and state registries were searched to determine patient survival and pulmonary function. RESULTS: Of 54 patients undergoing LVRS,29 patients (18 men and 11 women) were available for follow-up,which ranged from 36 to 66 months (mean +/- SE,51 +/- 1.5 months). There was significant sustained improvement in modified Medical Research Council scores compared to pre-LVRS: 2.19 +/- 0.19 vs 2.88 +/- 0.14 (p = 0.0000). Eleven of 22 patients demonstrated an increase in all three Mahler baseline dyspnea index grades of at least one level. Baseline body mass index (BMI) and post-LVRS length of stay (LOS) were significantly associated with survival: survivor vs deceased baseline BMI,24.2 +/- 0.6 vs 21.4 +/- 0.5 (p = 0.002),and post-LVRS LOS,15.4 +/- 1.7 days vs 28.7 +/- 5.3 days (p = 0.015). Compared to pre-LVRS,20 patients with mean follow-up time of 45 months demonstrated significant sustained improvements in FEV(1) percentage of predicted (31.4 +/- 2.1% vs 39.8 +/- 3.5%,p = 0.038),total lung capacity percentage of predicted (136 +/- 4% vs 122 +/- 3%,p = 0.0004),and residual volume percentage of predicted (237 +/- 14% vs 172 +/- 11%,p = 0.0001). Patient HRQL measured using the Dartmouth Primary Care Co-operative Quality of Life questionnaire was more favorable than that reported in aged-care settings. Caregiver burden scale scores indicate caring for a recipient of LVRS carries similar burden to that for caring for individuals with other chronic illnesses. CONCLUSIONS: In this population,a majority of the LVRS patients survived for >/= 3 years. Among survivors,dyspnea and lung function benefits were seen. Baseline BMI and postoperative LOS were significantly associated with survival."," Chest 123(6): 1838-1846.","Australia",2003,"Respiratory",null,"CBS","Adults","Observational",null,"Australia","Adults","Respiratory",null,"Observational",null,"CBS","2000:2004"]
[8,"Askim,T.,et al. (2004). \"Evaluation of an extended stroke unit service with early supported discharge for patients living in a rural community. A randomized controlled trial.\" Clin Rehabil 18(3): 238-248.",null,"Askim,T.,et al.","Evaluation of an extended stroke unit service with early supported discharge for patients living in a rural community. A randomized controlled trial","OBJECTIVE: To evaluate the effect of an extended stroke unit service (extended service),with early supported discharge and co-ordination of further rehabilitation in co-operation with the primary health care system in three rural municipalities. DESIGN: A randomized controlled trial comparing extended service with ordinary stroke unit service (ordinary service). SUBJECTS: Sixty-two eligible patients with acute stroke living in the rural municipalities of Malvik,Melhus and Klaebu. MAIN MEASURES: The primary outcome was the proportion of patients who were independent according to Modified Rankin Scale (mRS) (independence = mRS < or = 2) 52 weeks after onset of stroke. Secondary outcomes were mRS at 6 and 26 weeks and Barthel Index (BI),Nottingham Health Profile (NHP) and Caregiver Strain Index (CSI) at 6,26 and 52 weeks. Mortality and length of stay were registered during the 52 weeks. RESULTS: Twelve patients (39%) in the extended service group versus 16 patients (52%) in the ordinary service group were independent according to mRS at 52 weeks (p = 0.444). The odds ratio for independence (extended service versus ordinary service) was 0.33 (95% confidence interval (CI) 0.088-1.234). According to outcome by secondary measures there were no significant differences except less social isolation on NHP in the extended service group at 26 weeks (p = 0.046). There were no significant differences in length of stay. CONCLUSION: An extended stroke unit service with early supported discharge seems to have no positive effect on functional outcome for patients living in rural communities,but might give a trend toward better quality of life. There were no significant differences in length of stay."," Clin Rehabil 18(3): 238-248.","Norway",2004,"Stroke",null,"CSI","Adults","RCT",null,"Norway","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[9,"Banaszkiewicz,K.,et al. (2012). \"Huntington's disease from the patient,caregiver and physician's perspectives: three sides of the same coin?\" J Neural Transm (Vienna) 119(11): 1361-1365.",null,"Banaszkiewicz,K.,et al.","Huntington's disease from the patient,caregiver and physician's perspectives: three sides of the same coin?","The aim of this study was to identify determinants of functional disability,patient's quality of life (QoL) and caregivers' burden in Huntington's disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor,behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability,health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score,SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances,cognitive impairment,apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient's QoL,while motor disturbances and depression were the predictors of the caregiver burden. Patient's disability and QoL as well as caregivers' burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different."," J Neural Transm (Vienna) 119(11): 1361-1365.","Poland",2012,"Neurology",null,"CBI","Adults","Observational",null,"Poland","Adults","Neurology",null,"Observational",null,"CBI","2010:2014"]
[10,"Bek,N.,et al. (2009). \"Turkish version of impact on family scale: a study of reliability and validity.\" Health Qual Life Outcomes 7: 4.",null,"Bek,N.,et al.","Turkish version of impact on family scale: a study of reliability and validity","BACKGROUND: Although there is a considerably high prevalence of developmental disorders in Turkey there are not many assessment tools related to evaluating the impact of these children on their family. The aim of this study was to determine the validity and reliability of the Turkish version of the Impact on Family Scale (IPFAM),a health related quality of life measurement to be utilized in clinical trials,health care services,research and evaluation. METHODS: Caregivers of 85 children with developmental disabilities answered the questionnaire and 65 of them answered it twice with a one week interval. The reliability of the measurement was assessed by Cronbach's alpha coefficient,and with intraclass correlation coefficient (ICC) for test-retest reliability. Construct validity was assessed by calculating the correlation between total impact score of IPFAM,WeeFIM and the physiotherapists' evaluation via Visual Analogue Scale (VAS) to determine the child's disability. RESULTS: Test-retest reliability was found to be ICC = 0.953 for total impact,0.843 for financial support,0.940 for general impact,0.871 for disruption of social relations and 0.787 for coping. Internal consistency was tested using Cronbach's alpha and was found to be 0.902 for total impact of IPFAM. For construct validity the correlation between total impact score of IPFAM and WeeFIM was r = -0,532 (p < 0.001) and the correlation between total impact score of IPFAM and the physiotherapist's evaluation was r = 0.519 (p < 0.001). CONCLUSION: The Turkish version of IPFAM was found to be a reliable and valid instrument for assessing the impact of developmental disorders of the child on the family."," Health Qual Life Outcomes 7: 4.","Turkey",2009,"Developmental",null,"IOFS","Children and Adolescents","Validation",null,"Turkey","Children and Adolescents","Developmental",null,"Validation",null,"IOFS","2005:2009"]
[11,"Belasco,A. G. and R. Sesso (2002). \"Burden and quality of life of caregivers for hemodialysis patients.\" Am J Kidney Dis 39(4): 805-812.",null,"Belasco,A. G. and R. Sesso","Burden and quality of life of caregivers for hemodialysis patients","The aim of this study is to describe the characteristics of caregivers of chronic hemodialysis patients,assess their perceived burden and health-related quality of life,and investigate factors influencing this burden. We studied 100 hemodialysis patients and their respective primary caregivers for more than 4 months,measuring quality of life by the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Subjective burden on caregivers was assessed by the Caregiver Burden scale (score range,1 to 4; higher values indicate a greater effect). The majority of caregivers were women (84%),married (66%),with a mean age of 46 +/- 2 (SE) years,and of low socioeconomic level. Their main types of relationship with patients were wives (38%) and sons or daughters (27%). Caregiver Mental Health and Vitality were the most affected emotional dimensions on the SF-36 (mean scores,64.4 +/- 1.8 and 66.6 +/- 1.7,respectively). Mean score of total burden experienced was 2.07 +/- 0.05. Multiple regression analysis showed that independent and significant predictors of burden were Mental Health of the caregiver (R2 = 24%),Vitality of the patient (R2 = 10%),type of relationship of the caregiver (female spouse) (R2 = 5%),and Pain of the caregiver (R2 = 3%). Caregivers of hemodialysis patients may experience a significant burden and an adverse effect on their quality of life. Emotional aspects of caregivers (particularly female spouses) and patients are important predictors of burden. Social support and psychological interventions should be considered to improve caregiver life and patient outcomes."," Am J Kidney Dis 39(4): 805-812.","Brazil",2002,"Renal",null,"CBS","Unspecified","Observational",null,"Brazil","Unspecified","Renal",null,"Observational",null,"CBS","2000:2004"]
[12,"Belasco,A.,et al. (2006). \"Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis.\" Am J Kidney Dis 48(6): 955-963.",null,"Belasco,A.,et al.","Quality of life of family caregivers of elderly patients on hemodialysis and peritoneal dialysis","BACKGROUND: Despite the growing number of elderly patients with end-stage renal disease who need support,there are few studies about their caregivers. The objective of this study is to describe caregivers' characteristics and evaluate their burden and quality of life. METHODS: We studied caregivers of elderly patients (>or=65 years) on hemodialysis (HD) therapy (n = 84),on peritoneal dialysis (PD) therapy (n = 40),and a group of caregivers (n = 77) of nonelderly HD patients. Their quality of life was evaluated by using the Medical Outcomes Study 36-Item Short-Form Health Survey questionnaire,Caregiver Burden scale,and Cognitive Index of Depression. RESULTS: Most caregivers of the elderly were women (78%) aged 55 +/- 15 years and sons or daughters (41%) or wives or husbands (50%) of patients. Caregivers' Emotional Aspect,Vitality,and Mental Health were the most affected dimensions. The Mental Component Summary mean score,adjusted for patient race,educational level,primary diagnosis,hematocrit,comorbidities,and physical functional status,was worse for caregivers of PD than HD elderly patients (36.3 +/- 1.9 versus 44.8 +/- 1.5; P < 0.01). The most affected Caregiver Burden scale dimensions were General Strain and Environment. Thirty-two percent of caregivers showed signs of depression. CONCLUSION: Caregivers of elderly dialysis patients,especially of those on PD therapy,experience a significant burden and adverse effects on their quality of life. Educational,social,and psychological support interventions should be considered to improve the quality of life of caregivers."," Am J Kidney Dis 48(6): 955-963.","Brazil",2006,"Renal",null,"CBS","Older Persons","Observational",null,"Brazil","Older Persons","Renal",null,"Observational",null,"CBS","2005:2009"]
[13,"Bell,C. M.,et al. (2001). \"The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease.\" Alzheimer Dis Assoc Disord 15(3): 129-136.",null,"Bell,C. M.,et al.","The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease","The burden experienced by family caregivers of individuals with Alzheimer disease (AD) affects the caregivers' overall health-related quality of life (HRQOL). Assessing the influence on HRQOL is an integral part of determining the efficacy and economic attractiveness of interventions for AD. Generic preference-weighted instruments such as the Health Utilities Index Mark 2 (HUI2) are recommended for measuring HRQOL for cost-effectiveness studies. However,these instruments focus on physical attributes and have not been tested in an AD caregiver population. We administered the HUI2 to a population of 679 caregivers to people with AD at 13 community and institutional sites in the United States. We also administered the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36),a caregiver time questionnaire,and a caregiver burden instrument. The mean global HUI2 utility score for caregivers was 0.87 and varied little by the affected person's setting of care and AD stage (range,0.86-0.89; p > 0.2). The caregiver burden scales all varied by the affected person's setting of care,and some also varied by disease severity. The mental health component summary score of the SF-36 for caregivers varied across both disease stage and setting. Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. Generic preference-weighted instruments may not adequately capture differences in the burden of caregivers of those with AD. The development of condition-specific preference-weighted instruments may provide the means to better estimate HRQOL in AD caregivers."," Alzheimer Dis Assoc Disord 15(3): 129-136.","USA",2001,"Dementia",null,"Unclear","Older Persons","Observational",null,"USA","Older Persons","Dementia",null,"Observational",null,"Unclear","2000:2004"]
[14,"Bertule,D. and A. Vetra (2014). \"The family needs of parents of preschool children with cerebral palsy: the impact of child's gross motor and communications functions.\" Medicina (Kaunas) 50(6): 323-328.",null,"Bertule,D. and A. Vetra","The family needs of parents of preschool children with cerebral palsy: the impact of child's gross motor and communications functions","BACKGROUND AND OBJECTIVE: An understanding of the needs of families of preschool children with cerebral palsy (CP) is of essential importance if efficient and cost-effective services are to be provided to them. The aims of this study were to identify the most frequently expressed needs of families with preschool children with CP; differences in the amount and types of family needs based on the child's gross motor function and communication function level; and the impact of the child's gross motor function and communication function level on the type and amount of family needs. MATERIALS AND METHODS: A total of 227 parents of preschool children with CP completed a modified version of the Family Needs Survey and a demographic questionnaire. Children's gross motor function level and communication function level was classified using the Gross Motor Function Classification System (GMFCS) and the Communication Function Classification System (CFCS),respectively. RESULTS: The total number of family needs differed based on GMFCS and CFCS levels. Children's GMFCS and CFCS level were not significant predictors of overall family needs (adjusted R(2)=0.163). In this model the GMFCS level of children did not account for the total number of family needs,while the CFCS level did. CONCLUSIONS: Child's limitations in terms of communication and gross motor functions must be taken into consideration when planning services for families with preschool children with CP."," Medicina (Kaunas) 50(6): 323-328.","Latvia",2014,"Neurology",null,"FNQ","Children and Adolescents","Observational",null,"Latvia","Children and Adolescents","Neurology",null,"Observational",null,"FNQ","2010:2014"]
[15,"Blank,S. J.,et al. (2014). \"Caregiver Quality of Life Is Related to Severity of Otitis Media in Children.\" Otolaryngol Head Neck Surg 151(2): 348-353.",null,"Blank,S. J.,et al.","Caregiver Quality of Life Is Related to Severity of Otitis Media in Children","OBJECTIVE: Otitis media (OM) in children is the most frequent reason for physician visits in developed countries and burdens caregivers,society,and the child. Our objective was to describe the impact of OM severity on parent/caregiver quality of life (QoL). STUDY DESIGN: Multi-institutional prospective cross-sectional study. SETTING: Otolaryngology,family,and pediatric practices. SUBJECTS AND METHODS: Children 6 to 24 months old with and without a primary diagnosis of recurrent OM and their caregivers. Physicians provided patient history,and parents/caregivers completed a Family Information Form,the PedsQL Family Impact survey,the Patient Reported Outcomes Measurement Information System (PROMIS) survey,and the OM 6-item severity survey (OM-6). RESULTS: A total of 2413 subjects were enrolled and data from 1208 patients and physician were analyzed. The average child age was 16 months,and 54% were male. The mean OM-6 score was 3.2. The mean PedsQL Family Impact score for parents was 66.9 from otolaryngology sites and 78.8 from pediatrics/family practice sites (P < .001). Higher (worse) OM-6 scores correlated significantly with worse PedsQL Family Impact scores (Pearson r = -0.512,P < .01). Similarly,increasing OM-6 scores strongly correlated with increased parental anxiety,depression,and fatigue,as well as decreased satisfaction (all P < .01). CONCLUSIONS: Worse PedsQL Family Impact and PROMIS scores were highly correlated with elevated OM-6 scores,suggesting that severity of childhood OM significantly affects parent/caregiver QoL. Understanding the impact of a child's illness on parent/caregiver QoL can help physicians counsel patients and families and provide better family-centered,compassionate care."," Otolaryngol Head Neck Surg 151(2): 348-353.","USA",2014,"Sensory",null,"PedsQL-FIM","Children and Adolescents","Observational",null,"USA","Children and Adolescents","Sensory",null,"Observational",null,"PedsQL-FIM","2010:2014"]
[16,"Boudas,R.,et al. (2013). \"Cross-cultural French adaptation and validation of the Impact On Family Scale (IOFS).\" Health Qual Life Outcomes 11: 67.",null,"Boudas,R.,et al.","Cross-cultural French adaptation and validation of the Impact On Family Scale (IOFS)","BACKGROUND: The IOFS (Impact On Family Scale) questionnaire is a useful instrument to assess the impact of chronic childhood conditions on general family quality of life. As this instrument was not validated in French,we proposed to translate,adapt and validate the IOFS questionnaire for clinical and research use in French-speaking populations. FINDINGS: The sample studied comprised French-speaking parents with a child presenting a cleft lip or cleft lip and palate,aged 6 to 12 years and treated in the University Hospital of Strasbourg,France. The 15-item version of the IOFS was translated into French and then sent to the parents by post. The structure of the measure was studied using Exploratory Factor Analysis (EFA),internal consistency was assessed using Cronbach's alpha coefficient and test-retest reliability was studied by calculating the Intraclass Correlation Coefficient (ICC). CONCLUSIONS: The French version of the IOFS questionnaire exhibited very good psychometric properties. For practitioners,this instrument will facilitate the assessment of the impact of chronic childhood conditions on quality of life among French-speaking families."," Health Qual Life Outcomes 11: 67.","France",2013,"Various",null,"IOFS","Children and adolescents","Validation",null,"France","Children and Adolescents","Various",null,"Validation",null,"IOFS","2010:2014"]
[17,"Brodaty,H.,et al. (2014). \"Prevalence and predictors of burden in caregivers of people with dementia.\" Am J Geriatr Psychiatry 22(8): 756-765.",null,"Brodaty,H.,et al.","Prevalence and predictors of burden in caregivers of people with dementia","OBJECTIVE: To examine prevalence and predictors of burden in caregivers of people with dementia attending memory clinics. METHODS: This Prospective cohort study conducted at nine memory clinics in Australia rated 732 outpatient attendees and their primary caregivers at baseline and at 3,6,12,24,and 36 months. Ratings were based on the following: dementia diagnosis according to the Diagnostic and Statistical Manual of Mental Disorders,Fourth Edition,Mini-Mental State Exam,Alzheimer's Disease Assessment Scale-Cognitive,Functional Autonomy Measurement System,Neuropsychiatric Inventory,use of psychotropic and antidepressant medications,patient and caregiver resource use,and the Zarit Caregiver Burden Interview (ZBI). RESULTS: Half the caregivers had significantly high levels of burden,rising to 57.7% at 12 months; with moderate to severe burden rates,rising from 14.7% at baseline to 22.8% at 12 months; and mean ZBI levels rising from 22.9 at baseline to 25.5 at 6 months and 27.7 at 12 months. Caregiver predictors of 6- and 12-month burden were their neuroticism and baseline ZBI score. Patient predictors were their level of behavioral symptoms,use of antipsychotics and antidepressants,and more rapid functional decline. Other predictors (female caregiver,level of cognition and function,diagnosis of frontotemporal dementia) were not significant in regression analyses. CONCLUSION: Caregivers of people with dementia have high and persistent rates of burden. Identification of caregivers likely to have high levels of burden at 12 months may allow more accurate targeting of interventions."," Am J Geriatr Psychiatry 22(8): 756-765.","Australia",2014,"Dementia",null,"Zarit","Older Persons","Observational",null,"Australia","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[18,"Brouwer,W. B.,et al. (2004). \"Burden of caregiving: evidence of objective burden,subjective burden,and quality of life impacts on informal caregivers of patients with rheumatoid arthritis.\" Arthritis Rheum 51(4): 570-577.",null,"Brouwer,W. B.,et al.","Burden of caregiving: evidence of objective burden,subjective burden,and quality of life impacts on informal caregivers of patients with rheumatoid arthritis","OBJECTIVE: To improve understanding of the nature and magnitude of the burden of informal care and also to indicate important areas for improving the current ways in which informal care is investigated. METHODS: Information on objective burden (such as care tasks performed and time investment),subjective burden (using the Caregiver Reaction Assessment instrument and a self-rated burden score),and quality of life (using the EuroQoL instrument) were collected in a postal questionnaire of 153 informal caregivers who provide care for rheumatoid arthritis (RA) patients. RESULTS: Caregivers had been caring for the RA patients on average for >11 years,reflecting the chronic nature of RA. They provide a substantial amount of care (27.4 hours per week) and are moderately strained (24.6 on the self-rated burden scale). Caregivers are relatively healthy on average but caregivers of more severe RA patients are relatively unhealthy,which may indicate health losses due to caregiving. CONCLUSION: Informal care can be burdensome in the context of RA. More information may help assist informal caregivers in caring for RA patients and help to avoid health problems and high subjective burden."," Arthritis Rheum 51(4): 570-577.","Netherlands",2004,"Musculoskeletal",null,"SRB,CRA","Adults","Observational",null,"Netherlands","Adults","Musculoskeletal",null,"Observational",null,"SRB,CRA","2000:2004"]
[19,"Bruns,A.,et al. (2008). \"Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis patients.\" Joint Bone Spine 75(2): 149-154.",null,"Bruns,A.,et al.","Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis patients","OBJECTIVES: To evaluate the quality of life and the disease burden on primary caregivers of patients with juvenile idiopathic arthritis (JIA). METHODS: Seventy patients with JIA and their respective caregivers were enrolled in this study. Health,quality of life and psychological status were assessed by using the childhood health assessment questionnaire (CHAQ),the medical outcomes study 36-item short-form health survey (SF-36) and the psychiatric screening questionnaire (SRQ-20). Burden of disease on the caregivers was measured by the caregiver burden scale (CB Scale). RESULTS: Most caregivers were women (91.4%),married (76.6%),mothers (92.2%) and their average age was 37.2+/-8.8 years. Low education and socioeconomic state were observed in most of the caregivers. Psychoemotional disorders measured by the SRQ-20 were detected in 34.3% of the caregivers. Pain and mental health were the items in the SF-36 questionnaire most affected in these individuals. Mean score of global burden measured by the CB Scale was 1.6+/-0.3 (disappointment and environment had the lowest scores). The CB Scale was significantly correlated with the SRQ-20 (r=0.6),number of limited joints (r=0.3),number of visits (r=0.2),family income (r=-0.3) and mental health (r=-0.6),emotional aspects (r=-0.4),social aspects (r=-0.4),vitality (r=-0.5) and general health state of the SF-36 (r=-0.4). SRQ-20 was the most important determinant of CB Scale and of the components pain and mental health of the SF-36 questionnaire. CONCLUSIONS: Most of the disease burden on the caregivers depends upon emotional aspects rather than on the physical status of the patients."," Joint Bone Spine 75(2): 149-154.","Brazil",2008,"Musculoskeletal",null,"CBS","Children and Adolescents","Observational",null,"Brazil","Children and Adolescents","Musculoskeletal",null,"Observational",null,"CBS","2005:2009"]
[20,"Caqueo-Urizar,A.,et al. (2013). \"Typology of schizophrenic symptoms and quality of life in patients and their main caregivers in northern Chile.\" Int J Soc Psychiatry 59(1): 93-100.",null,"Caqueo-Urizar,A.,et al.","Typology of schizophrenic symptoms and quality of life in patients and their main caregivers in northern Chile","BACKGROUND: Schizophrenia is a serious mental disorder characterized by the presence of both 'positive' and 'negative' symptoms that affect the essential functions through which a person gains his or her sense of individuality and capacity for independent functioning. AIMS: To describe the typology of schizophrenic symptoms and their relationship to quality of life in patients with schizophrenia and their main caregivers. METHODS: Participants were 45 patients and 45 relatives seen by the mental health services in Arica,Chile. Patients were assessed using the Positive and Negative Syndrome Scale (PANSS),the Seville Quality of Life Questionnaire (SQLQ),and the Social Functioning Scale (SFS). The latter was also administered to caregivers,along with the Zarit Burden Interview. RESULTS: Patients reported moderate levels of quality of life,there being a strong relationship with the negative syndrome and the general psychopathology of the disorder. The quality of life of main caregivers was related with the general psychopathology of patients. The results regarding social functioning and the caregivers' perceptions of patients' functional capacity showed that patients had a very limited degree of social integration. CONCLUSIONS: Negative symptoms and general psychopathology are the main predictors of quality of life in both patients and their caregivers."," Int J Soc Psychiatry 59(1): 93-100.","Chile",2013,"Psychiatric",null,"Zarit,SFS","Unspecified","Observational",null,"Chile","Unspecified","Psychiatric",null,"Observational",null,"Zarit,SFS","2010:2014"]
[21,"Cardenas-Valladolid,J.,et al. (2010). \"Prevalence of adherence to treatment in homebound elderly people in primary health care: a descriptive,cross-sectional,multicentre study.\" Drugs Aging 27(8): 641-651.",null,"Cardenas-Valladolid,J.,et al.","Prevalence of adherence to treatment in homebound elderly people in primary health care: a descriptive,cross-sectional,multicentre study","BACKGROUND: Adherence to the therapeutic plan is one of the most important health issues in terms of treatment efficacy,healthcare costs and patient safety. Unfortunately,homebound elderly patients are especially vulnerable to nonadherence because they have higher morbidity rates combined with cognitive and social problems that hinder their correct use of drugs. The level of therapeutic adherence in homebound elderly people has not been adequately studied. OBJECTIVE: To estimate the prevalence of therapeutic adherence,using the Morisky-Green test,in homebound elderly patients taking polypharmacy (defined as use of four or more drugs),and to study the factors associated with adherence. METHODS: This was a descriptive,cross-sectional,multicentre study. A total of 327 patients were selected by random start systematic sampling from the total number of homebound patients taking four or more drugs in Healthcare Area 4 of the Madrid Autonomous Region,Spain. Through an in-home survey of patients and their caregivers,information was gathered on sociodemographic data,co-morbidities,number of hospital admissions,responsibility for purchasing and preparation of the medication,level of cognitive impairment (Pfeiffer questionnaire),functional dependence in activities of daily living (Katz Index),knowledge of the disease (Batalla test),adherence to treatment (Morisky-Green test),visual and auditory perception,and caregiver burden (Zarit interview). RESULTS: Of the homebound patients,65.7% (95% CI 60.6,70.9) had good adherence to treatment. The variables most negatively associated with therapeutic adherence,after adjustment for age,sex,number of drugs,knowledge of the disease,and cognitive function,were a large caregiver burden (odds ratio [OR] 3.09; 95% CI 1.75,5.48) and impaired hearing (OR 2.00; 95% CI 1.17,3.40). There was also a trend toward a positive association between nonadherence and patients aged <85 years (OR 1.57; 95% CI 0.93,2.65) and patients who had nine or more drug prescriptions (OR 1.59; 95% CI 0.96,2.65). CONCLUSIONS: Poor therapeutic adherence in homebound elderly patients receiving polypharmacy is a serious problem affecting one of every three individuals concerned,and is directly related to caregiver burden,regardless of age,sex,cognitive status or number of drugs administered."," Drugs Aging 27(8): 641-651.","Spain",2010,"Frailty",null,"Zarit","Older Persons","Observational",null,"Spain","Older Persons","Frailty",null,"Observational",null,"Zarit","2010:2014"]
[22,"Carod-Artal,F. J.,et al. (2013). \"Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients.\" Parkinsonism Relat Disord 19(11): 943-948.",null,"Carod-Artal,F. J.,et al.","Burden and health-related quality of life among caregivers of Brazilian Parkinson's disease patients","PURPOSE: To analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients. METHODS: Caregivers answered Hospital Anxiety and Depression Scale (HADS),Zarit caregiver burden interview (ZCBI) and EQ-5D,a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor,Cognition,Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale. RESULTS: 50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years),p < 0.0001. Eighty-eight per cent of caregivers were females,and 78% were spouses. The proportion of caregivers who scored >/=11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8),and significantly worsened as severity of disease,based on H&Y,increased (H&Y 1-2: 16.4,H&Y 3-5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = -0.27 to -0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood,time of caregiving) were independent predictors of caregiver burden (adjusted R(2) = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL,as measured by the EQ-5D Index (adjusted R(2) = 0.28; p = 0.006). CONCLUSIONS: Patients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers."," Parkinsonism Relat Disord 19(11): 943-948.","Brazil",2013,"Parkinson's",null,"Zarit","Adults","Observational",null,"Brazil","Adults","Parkinson's",null,"Observational",null,"Zarit","2010:2014"]
[23,"Cate,I. M.,et al. (2002). \"Disability and quality of life in spina bifida and hydrocephalus.\" Dev Med Child Neurol 44(5): 317-322.",null,"Cate,I. M.,et al.","Disability and quality of life in spina bifida and hydrocephalus","This study examined the impact of severity and type of condition and family resources on quality of life in children with spina bifida and hydrocephalus. A national UK sample of children aged between 6 and 13 years with spina bifida (n=62),hydrocephalus (n=354),and spina bifida plus hydrocephalus (n=128) were identified via the register of the Association for Spina Bifida and Hydrocephalus (ASBAH). Parents completed standardized measures of Child Health Related Quality Of Life (CQOL),family needs survey (FNS),and caregiving self-efficacy scale (CSES) as well as questions on children's health and physical ability. Results showed there were no significant differences in the overall quality of life for the three disability conditions. The overall CQOL was over 1 SD lower for those with spina bifida and hydrocephalus than for children with other physical conditions. Sex and age were not related to overall CQOL. Specific aspects of CQOL differentiated the three groups. Children with spina bifida had poorer CQOL scores on self-care,continence,and mobility/activities whilst those with hydrocephalus had poorer scores on school activities,worries,sight,and communication. Severity of condition and family resources,i.e. CSES and FNS,predicted 32% of the variance in CQOL. Associations were also found between overall CQOL and problems discernible at birth as well as epilepsy. Other factors,including those related to shunts,were not significantly related to CQOL. It was concluded that hydrocephalus is just as great a threat to CQOL as spina bifida. Beyond the general effect of condition severity on CQOL,family resources (as measured by the CSES and FNS) represent an additional influence on CQOL."," Dev Med Child Neurol 44(5): 317-322.","UK",2002,"Neurology",null,"FNQ,CSES","Children and Adolescents","Observational",null,"UK","Children and Adolescents","Neurology",null,"Observational",null,"FNQ,CSES","2000:2004"]
[24,"Chan,R. C.,et al. (2000). \"Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting.\" Spinal Cord 38(11): 687-696.",null,"Chan,R. C.,et al.","Coping with spinal cord injury: personal and marital adjustment in the Hong Kong Chinese setting","STUDY DESIGN: A cross-sectional retrospective study was carried out with structured questionnaires and semi-structured interviews on 66 persons with spinal cord injury (SCI) and 40 spouses. OBJECTIVES: The study aimed to explore the psychosocial adjustment of Hong Kong Chinese couples at the post SCI stage. An important study interest was the impact of care-giving in spouses of persons with SCI. SETTING: Three major regional rehabilitation centres and one community resource centre in Hong Kong. METHODS: A set of psychometric measures tapping different aspects of psychological functioning was included. These were locus of control (Levenson's Internality,Powerful Others,and Chance Scale),perceived social support (Provision of Social Relationship),coping strategies (Ways of Coping Checklist),marital adjustment (Dyadic Adjustment Scale),caregiving burden (Caregiver Burden Inventory),depression (Beck Depression Inventory),life satisfaction (Satisfaction with Life Situation),and social role adjustment (Katz Adjustment Scale - Relative Form). RESULTS: Persons with SCI with pre-injury marriage were more depressed (P<0.05) as compared with those with post-injury marriage. However,the two groups did not differ in terms of satisfaction with life situation and social role dissatisfaction. The spouses in the preinjury marriage reported a significantly higher score in time-dependent burden than those in the post-injury marriage (P<0.05). Care-giving burden was associated with locus of control,social support,and modes of coping (P<0.05). CONCLUSION: The impact of SCI is a long-lasting effect not limited to the patients but also extending to their spouses. Findings from the adjustment outcomes and coping styles of persons with SCI and their spouses indicate that they are not passive victims. A similar injury may produce different outcomes in different individuals. Rehabilitation professionals should thus be alert to both the couple's differing needs and idiosyncrasies in their helping process."," Spinal Cord 38(11): 687-696.","China",2000,"Neurology",null,"CBI,Katz","Adults","Observational",null,"China","Adults","Neurology",null,"Observational",null,"CBI,Katz","2000:2004"]
[25,"Chapko,M.,et al. (1993). \"Data collection in the Adult Day Health Care Evaluation Study.\" Med Care 31(9 Suppl): Ss15-25.",null,"Chapko,M.,et al.","Data collection in the Adult Day Health Care Evaluation Study","This report presents data collection measures and methods for the evaluation of Adult Day Health Care (ADHC) in the Department of Veterans Affairs (VA). Measures of patient health were survival,the Sickness Impact Profile,self-rated health,the Mini-Mental State Exam,Psychological Distress Scale,Social Support Scale,and Problem Behaviors Scale. Measures of health for the care giver were: Activities of Daily Living,Instrumental Activities of Daily Living,health perceptions,Psychological Distress Scale,life satisfaction,Social Support Scale,and Caregiver Burden Scale. We also assessed patient and care giver satisfaction with the care received by the patient. Measures of health status and outcomes were assessed primarily through patient and care giver interview at study enrollment,6 months,and 12 months. Utilization and cost both within and outside VA were assessed for hospital,ambulatory care,nursing home,ADHC,home care,pharmacy,laboratory,and other forms of health care. Sources of utilization data included VA's computerized patient database,VA medical records,patient questionnaires,care giver questionnaires,and health care providers outside VA. Costs were obtained from VA's cost accounting system,VA Central Office,VA's contracts with outside providers,and directly from outside providers. Utilization and cost were assessed for each patient for a period of 1 year after entry into the study."," Med Care 31(9 Suppl): Ss15-25.","USA",1993,"Frailty",null,"CBS,SSS","Older Persons","Protocol",null,"USA","Older Persons","Frailty",null,"Protocol",null,"CBS,SSS","1990:1994"]
[26,"Chew,J.,et al. (2015). \"Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach.\" Clin Interv Aging 10: 1687-1694.",null,"Chew,J.,et al.","Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach","BACKGROUND: Nonpharmacological interventions such as exercise and cognitive rehabilitation programs have shown promise in reducing the impact of dementia on the individual and the caregiver. In this study,we examine the effect of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers using conventional measures of cognition,behavior,quality of life (QoL),and caregiver burden together with goal attainment scaling (GAS),an individualized outcome measure. METHODS: Goals were set at baseline,and GAS score was calculated at the end of the program. Participants were also assessed with the Chinese Mini-Mental State Examination,functional and behavioral scales (Barthel Index),Instrumental Activities of Daily Living,Neuropsychiatric Inventory Questionnaire,QoL,and caregiver burden using EuroQol-five dimension questionnaire and Zarit Burden Interview (ZBI). Differences in median scores postintervention were obtained. Further analysis of caregiver burden was undertaken utilizing the multidimensional classification of burden on the ZBI. RESULTS: Thirty-four (61.8%) patients were assessed to have met their goals (GAS score>/=50). Mean (standard deviation) GAS score was 48.6 (6.5). Cognition goals were set in only 20.6%,followed by goals to improve engagement and socialization; reduce caregiver stress; and improve physical function,behavior,and mood. Median scores in the cognitive,functional,and QoL measures did not differ significantly pre- and postintervention. The intervention had a positive impact on role strain,a unique dimension of caregiver burden. CONCLUSION: This study provides evidence that a multimodal approach combining physical exercise and cognitive rehabilitation improves goal attainment and caregiver burden in individuals and caregivers of persons with mild dementia."," Clin Interv Aging 10: 1687-1694.","Singapore",2015,"Dementia",null,"Zarit","Older Persons","Observational",null,"Singapore","Older Persons","Dementia",null,"Observational",null,"Zarit","2015:2018"]
[27,"Chiatti,C.,et al. (2013). \"The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: study protocol for a randomized controlled trial.\" Trials 14: 155.",null,"Chiatti,C.,et al.","The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: study protocol for a randomized controlled trial","BACKGROUND: The epidemic of Alzheimer's disease (AD) represents a significant challenge for the health care and social service systems of many developed countries. AD affects both patients and family caregivers,on whom the main burden of care falls,putting them at higher risk of stress,anxiety,mortality and lower quality of life. Evidence remains controversial concerning the effectiveness of providing support to caregivers of AD patients,through case management,counseling,training,technological devices and the integration of existing care services. The main objectives of the UP-TECH project are: 1) to reduce the care burden of family caregivers of AD patients; and 2) to maintain AD patients at home. METHODS/DESIGN: A total of 450 dyads comprising AD patients and their caregivers in five health districts of the Marche region,Italy,will be randomized into three study arms. Participants in the first study arm will receive comprehensive care and support from a case manager (an ad hoc trained social worker) (UP group). Subjects in the second study arm will be similarly supported by a case manager,but in addition will receive a technological toolkit (UP-TECH group). Participants in the control arm will only receive brochures regarding available services. All subjects will be visited at home by a trained nurse who will assess them using a standardized questionnaire at enrollment (M0),6 months (M6) and 12 months (M12). Follow-up telephone interviews are scheduled at 24 months (M24). The primary outcomes are: 1) caregiver burden,measured using the Caregiver Burden Inventory (CBI); and 2) the actual number of days spent at home during the study period,defined as the number of days free from institutionalizations,hospitalizations and stays in an observation unit of an emergency room. DISCUSSION: The UP-TECH project protocol integrates previous evidence on the effectiveness of strategies in dementia care,that is,the use of case management,new technologies,nurse home visits and efforts toward the integration of existing services in an ambitious holistic design. The analysis of different interventions is expected to provide sound evidence of the effectiveness and cost of programs supporting AD patients in the community. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01700556."," Trials 14: 155.","Italy",2013,"Dementia",null,"CBI","Older Persons","Protocol",null,"Italy","Older Persons","Dementia",null,"Protocol",null,"CBI","2010:2014"]
[28,"Chiatti,C.,et al. (2015). \"The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population.\" Aging Ment Health 19(6): 517-525.",null,"Chiatti,C.,et al.","The UP-TECH project,an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population","OBJECTIVES: The paper describes recruitment results and characteristics of the UP-TECH clinical trial sample,including level of care services use,informal caregiver burden and its determinants. METHODS: UP-TECH is designed to test innovative care solutions for community-dwelling patients with moderate stage Alzheimer's disease and their caregivers in Italy. Four hundred and fifty patient-caregiver dyads were randomized into three arms receiving different combinations of services,composed of case management interventions,nurse visits,assistive technology and educational brochures. The research nurses administered a questionnaire comprising an in-depth socio-demographic assessment and several clinical scales,such as Novak's Caregiver Burden Inventory. Analyses of baseline data were conducted using uni- and bi-variate statistics. Linear regressions were computed to identify de-confounded correlates of caregiver burden. RESULTS: Four hundred and thirty-eight patient-caregiver dyads were recruited and randomized. In our sample,patients are predominantly women (71.5%),with an average age of 81.5 years and a mean Mini-Mental State Examination score of 16.2. Caregivers are mostly women (66.2%) and offspring (55.7%),with a mean caregiver burden score of 27.6. They provide more than 50 hours of care per week,while receiving an almost negligible support from public services. Factors associated with caregiver burden are female gender,kinship and the patient's behavioral disturbances. The most important factor associated with lower burden is the employment of a live-in care worker. CONCLUSION: The paper provides a comprehensive description of moderate stage Alzheimer's disease patients and their caregivers,suggesting useful markers of caregiver burden. The well-balanced randomization assures the reliability of the study data-set for prospective evaluation of care strategies."," Aging Ment Health 19(6): 517-525.","Italy",2015,"Dementia",null,"CBI","Older Persons","RCT",null,"Italy","Older Persons","Dementia",null,"RCT",null,"CBI","2015:2018"]
[29,"Chou,K. R.,et al. (1999). \"Burden experienced by caregivers of relatives with dementia in Taiwan.\" Nurs Res 48(4): 206-214.",null,"Chou,K. R.,et al.","Burden experienced by caregivers of relatives with dementia in Taiwan","BACKGROUND: The burden produced by caring for relatives with dementia is an increasing problem in the United States and Taiwan,necessitating a better understanding of the interrelationships of the factors that influence burden. OBJECTIVES: To test a theoretical model specifying how the demands of care,filial obligation,caregiving self-efficacy,coping strategies,and caregiving involvement affect caregiver burden. METHOD: A descriptive cross-sectional design with a convenience sample (n = 150) from outpatient clinics of three hospitals in Taiwan was used. The Caregiver Burden Inventory and the Cost of Care Index assessed caregiver burden. The antecedents of burden were assessed by the Physical Self-Maintenance Scale,Instrumental Activities of Daily Living,the Mini-Mental State Examination,the Revised Memory and Behavior Problem Checklist,the Montgomery obligation subscale,Cicirelli's obligation scale,the Caregiving Self-efficacy Scale,the Caregiving Involvement Scale,and the Ways of Coping Questionnaire. RESULTS: The original model did not fit the data well but minor respecifications produced a good model as evidenced by a chi2/df ratio of 2.1,a goodness-of-fit index of .89,and a comparative fit index of .93. Demands of care on the caregiver and filial obligation had direct positive effects on caregiving involvement. Caregiving involvement and emotion-focused coping had direct positive effects on caregiving burden. Filial obligation,caregiving self-efficacy,and problem-focused coping had direct negative effects on caregiving burden. Six of the seven original hypothesized structural relationships were confirmed in the final model. CONCLUSIONS: The Burden Model tested in this study corroborates findings from other burden studies and extends our knowledge of caregiver burden. Filial obligation,self-efficacy,demands of care,involvement in care,and coping were shown to predict burden in this sample of Taiwanese caregivers. Future study is needed to evaluate interventions designed for family caregivers of persons with dementia. Especially needed is research in the area of counseling and mental health services to assist caregivers in dealing with manifestations of burden."," Nurs Res 48(4): 206-214.","Taiwan",1999,"Dementia",null,"CBI,CCI","Older Persons","Observational",null,"Taiwan","Older Persons","Dementia",null,"Observational",null,"CBI,CCI","1995:1999"]
[30,"Chung,M. L.,et al. (2016). \"Depressive symptoms in patients with heart failure negatively affect family caregiver outcomes and quality of life.\" Eur J Cardiovasc Nurs 15(1): 30-38.",null,"Chung,M. L.,et al.","Depressive symptoms in patients with heart failure negatively affect family caregiver outcomes and quality of life","BACKGROUND: Depressive symptoms in people with heart failure (HF) are highly prevalent. Caring for patients with both HF and depression may be more burdensome than caring for patients with HF alone. AIMS: The purpose of this study was to examine differences in caregivers' outcomes (i.e. caregiving burden,difficulty and time spent on caregiving,perceptions of life change as a result of caregiving,and quality of life) between caregivers who take care of HF patients with depressive symptoms and without depressive symptoms. METHOD: Patient-caregiver dyads at an outpatient clinic completed survey questionnaires. Patients' depression was assessed using the Beck Depression Inventory-II (BDI-II); primary caregivers completed caregiving outcome questionnaires. Differences in caregiving outcomes between patients with and without depressive symptoms (BDI-II>/=14) were examined using t-tests,Chi-square,and Mann-Whitney U-test. RESULTS: Of 102 patients (64% male,mean age 61,41% NYHA Class III-IV,mean ejection fraction 35.8+/-13.9),26.5% had clinically significant depressive symptoms. Of the primary caregivers (78% female; mean age 56.7),42% reported severe burden (the Zarit Burden Interview (ZBI)>/=17). Caregivers of patients with depressive symptoms had a higher level of burden (25+/-13 vs 13.5+/-12 on the ZBI; p<0.001),spent more time caregiving (37+/-12 vs 30+/-11 on the Oberst Caregiving Burden Scale; p=0.004),and reported worse mental quality of life (46+/-10 vs 51+/-10 on the SF-12v2; p=0.026) than those of patients without depressive symptoms. CONCLUSION: Family members caring for HF patients with depressive symptoms had significantly higher levels of caregiving burden and worse quality of life compared to those caring for patients without depressive symptoms."," Eur J Cardiovasc Nurs 15(1): 30-38.","USA",2016,"Cardiac",null,"Zarit","Adults","Observational",null,"USA","Adults","Cardiac",null,"Observational",null,"Zarit","2015:2018"]
[31,"Cousins,R.,et al. (2002). \"Assessing caregiving distress: a conceptual analysis and a brief scale.\" Br J Clin Psychol 41(Pt 4): 387-403.",null,"Cousins,R.,et al.","Assessing caregiving distress: a conceptual analysis and a brief scale","OBJECTIVES: Although it is well known that informal caregiving can have negative outcomes,and is an important factor in institutionalization,there is currently no common model to assess psychological distress in caregivers. In this study,we considered the conceptualization of caregiving distress,and present a five-dimension,17-item Caregiving Distress Scale (CDS). DESIGN: The CDS was developed by administering several scales from the caregiving literature to a sample of 80 Parkinson's disease caregivers longitudinally. METHOD: A total of 58 items from published questionnaires were reduced initially by a hierarchical cluster analysis,then by factor analysis. RESULTS: This procedure produced five distinctive subscales - relationship distress,emotional burden,care-receiver demands,social impact,and personal cost - that also had high internal reliability. CONCLUSION: The CDS is quick to administer and score,and has the potential to be used to profile an individual caregiving situation. Of critical importance for the application of findings from the caregiving literature,the scale can be used to target the type of intervention for the amelioration of caregiving distress."," Br J Clin Psychol 41(Pt 4): 387-403.","UK",2002,"Parkinson's",null,"CDS","Unspecified","Validation",null,"UK","Unspecified","Parkinson's",null,"Validation",null,"CDS","2000:2004"]
[32,"Creemers,H.,et al. (2014). \"Cluster RCT of case management on patients' quality of life and caregiver strain in ALS.\" Neurology 82(1): 23-31.",null,"Creemers,H.,et al.","Cluster RCT of case management on patients' quality of life and caregiver strain in ALS","OBJECTIVES: To study the effect of case management on quality of life,caregiver strain,and perceived quality of care (QOC) in patients with amyotrophic lateral sclerosis (ALS) and their caregivers. METHODS: We conducted a multicenter cluster randomized controlled trial with the multidisciplinary ALS care team as the unit of randomization. During 12 months,patients with ALS and their caregivers received case management plus usual care or usual care alone. Outcome measures were the 40-item ALS Assessment Questionnaire (ALSAQ-40),Emotional Functioning domain (EF); the Caregiver Strain Index (CSI); and the QOC score. These measures were assessed at baseline and at 4,8,and 12 months. RESULTS: Case management resulted in no changes in ALSAQ-40 EF,CSI,or QOC from baseline to 12 months. ALSAQ-40 EF scores in both groups were similar at baseline and did not change over time (p = 0.331). CSI scores in both groups increased significantly (p < 0.0001). Patients with ALS from both groups rated their perceived QOC at baseline with a median score of 8,which did not change significantly during follow-up. CONCLUSION: Within the context of multidisciplinary ALS care teams,case management appears to confer no benefit for patients with ALS or their caregivers. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that case management in addition to multidisciplinary ALS care does not significantly improve health-related quality of life of patients with ALS."," Neurology 82(1): 23-31.","Netherlands",2014,"ALS",null,"CSI","Unspecified","RCT",null,"Netherlands","Unspecified","ALS",null,"RCT",null,"CSI","2010:2014"]
[33,"Daley,D. J.,et al. (2014). \"Adherence therapy improves medication adherence and quality of life in people with Parkinson's disease: a randomised controlled trial.\" Int J Clin Pract 68(8): 963-971.",null,"Daley,D. J.,et al.","Adherence therapy improves medication adherence and quality of life in people with Parkinson's disease: a randomised controlled trial","BACKGROUND: Many factors are associated with medication non-adherence in Parkinson's disease (PD),including complex treatment regimens,mood disorders and impaired cognition. However,interventions to improve adherence which acknowledge such factors are lacking. A phase II randomised controlled trial was conducted investigating whether Adherence Therapy (AT) improves medication adherence and quality of life (QoL) compared with routine care (RC) in PD. METHODS: Eligible PD patients and their spouse/carers were randomised to intervention (RC plus AT) or control (RC alone). Primary outcomes were change in adherence (Morisky Medication Adherence Scale) and QoL (Parkinson's Disease Questionnaire-39) from baseline to week-12 follow up. Secondary outcomes were MDS-UPDRS (part I,II,IV),Beliefs about Medication Questionnaire (BMQ),EuroQol (EQ-5D) and the Caregiving Distress Scale. Blinded data were analysed using logistic and linear regression models based on the intention-to-treat principle. RESULTS: Seventy-six patients and 46 spouse/carers completed the study (intervention: n = 38 patients,n = 24 spouse/carers). At week-12 AT significantly improved adherence compared with RC (OR 8.2; 95% CI: 2.8,24.3). Numbers needed to treat (NNT) were 2.2 (CI: 1.6,3.9). Compared with RC,AT significantly improved PDQ-39 (-9.0 CI: -12.2,-5.8),BMQ general harm (-1.0 CI: -1.9,-0.2) and MDS-UPDRS part II (-4.8 CI: -8.1,-1.4). No significant interaction was observed between the presence of a spouse/carer and the effect of AT. CONCLUSION: Adherence Therapy improved self-reported adherence and QoL in a PD sample. The small NNT suggests AT may be cost-effective. A larger pragmatic trial to test the efficacy and cost-effectiveness of AT by multiple therapists is required."," Int J Clin Pract 68(8): 963-971.","UK",2014,"Parkinson's",null,"CDS","Adults","RCT",null,"UK","Adults","Parkinson's",null,"RCT",null,"CDS","2010:2014"]
[34,"Dambi,J. M. and J. Jelsma (2014). \"The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study.\" BMC Pediatr 14: 301.",null,"Dambi,J. M. and J. Jelsma","The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study","BACKGROUND: Cerebral palsy requires appropriate on-going rehabilitation intervention which should effectively meet the needs of both children and parents/care-givers. The provision of effective support is a challenge,particularly in resource constrained settings. A quasi-experimental pragmatic research design was used to compare the impact of two models of rehabilitation service delivery currently offered in Harare,Zimbabwe,an outreach-based programme and the other institution-based. METHOD: Questionnaires were distributed to 46 caregivers of children with cerebral palsy at baseline and after three months. Twenty children received rehabilitation services in a community setting and 26 received services as outpatients at a central hospital. The Gross Motor Function Measurement was used to assess functional change. The burden of care was measured using the Caregiver Strain Index,satisfaction with physiotherapy was assessed using the modified Medrisk satisfaction with physiotherapy services questionnaire and compliance was measured as the proportion met of the scheduled appointments. RESULTS: Children receiving outreach-based treatment were significantly older than children in the institution-based group. Regression analysis revealed that,once age and level of severity were controlled for,children in the outreach-based treatment group improved their motor function 6% more than children receiving institution-based services. There were no differences detected between the groups with regard to caregiver well-being and 51% of the caregivers reported signs consistent with clinical distress/depression. Most caregivers (83%) expressed that they were overwhelmed by the caregiving role and this increased with the chronicity of care. The financial burden of caregiver was predictive of caregiver strain. Caregivers in the outreach-based group reported greater satisfaction with services and were more compliant (p < .001) as compared to recipients of institution-based services. CONCLUSION: Long term caregiving leads to strain in caregivers and there is a need to design interventions to alleviate the burden. The study was a pragmatic,quasi-experimental study thus causality cannot be inferred. However findings from this study suggest that the provision of care within a community setting as part of a well-structured outreach programme may be preferable method of service delivery within a resource-constrained context. It was associated with a greater improvement in functioning,greater satisfaction with services and better compliance."," BMC Pediatr 14: 301.","Zimbabwe",2014,"Neurology",null,"CSI","Children and Adolescents","Observational",null,"Zimbabwe","Children and Adolescents","Neurology",null,"Observational",null,"CSI","2010:2014"]
[35,"das Chagas Medeiros, M. M., et al. (2000). \"The effect of rheumatoid arthritis on the quality of life of primary caregivers.\" J Rheumatol 27(1): 76-83.",null,"das Chagas Medeiros, M. M., et al.","The effect of rheumatoid arthritis on the quality of life of primary caregivers","OBJECTIVE: Rheumatoid arthritis (RA) is a chronic and disabling disease frequently leading to physical and psychological dependence, with considerable economic consequences. Responsibility for care of the patient is taken on by a member of the family called the primary caregiver. Studies of caregivers of patients with RA are scarce. A better understanding of the caregiver's situation could provide interventions that reduce the burden and postpone institutionalization of people with arthritis disability. Our objective was to assess the effect of RA on the quality of life of primary caregivers. METHODS: Sixty-two patients from the rheumatic disease outpatient clinic and their respective caregivers were interviewed. Demographic and clinical data were recorded. Health and psychological status were measured using the Health Assessment Questionnaire (HAQ), Medical Outcomes Survey Short Form 36 (SF-36), Self-Reporting Questionnaire (SRQ-20), and a numerical pain rating scale. Burden of disease on the caregiver was assessed by the Caregiver Burden scale (CB scale). RESULTS: The majority of caregivers were women (82.3%), married (59.7%), mean (SD) age of 39.7 (15.7) years, with children/son (32.7%) or spouse (24.2%), with low education level and low income. Thirty-seven percent displayed psychoemotional disturbance measured by SRQ-20. Emotional aspect and mental health (by SF-36) were the most affected. The mean (SD) score of total burden experienced was 1.82 (0.59). The quality of relationship between caregivers and patients and SF-36 mental health of caregivers were important predictors of burden. CONCLUSION: Caregivers of patients with RA show high prevalence of psychological disturbance. The quality of the relationship between caregivers and patients and the mental health of the caregiver are important predictors of the burden of disease."," J Rheumatol 27(1): 76-83.","Brazil",2000,"Musculoskeletal",null,"CBS","Adults","Observational",null,"Brazil","Adults","Musculoskeletal",null,"Observational",null,"CBS","2000:2004"]
[36,"Degeneffe, C. E., et al. (2011). \"Development and validation of the Caregiver Empowerment Scale: a resource for working with family caregivers of persons with traumatic brain injury.\" Rehabil Psychol 56(3): 243-250.",null,"Degeneffe, C. E., et al.","Development and validation of the Caregiver Empowerment Scale: a resource for working with family caregivers of persons with traumatic brain injury","OBJECTIVE: To use multitrait analysis to determine the measurement structure of the Caregiver Empowerment Scale (CES). PARTICIPANTS: An American sample of 87 adult primary family caregivers of persons with traumatic brain injury (TBI). RESULTS: A four-factor structure was identified including factor 1 (Advocacy Self-Efficacy), factor 2 (Community Self-Efficacy), factor 3 (Caregiver Self-Efficacy), and factor 4 (Personal Self-Efficacy). CONCLUSIONS: The CES provides clinicians and researchers a means to assess self-perceived coping abilities of family caregivers of persons with TBI."," Rehabil Psychol 56(3): 243-250.","USA",2011,"Neurology",null,"CES","Adults","Validation",null,"USA","Adults","Neurology",null,"Validation",null,"CES","2010:2014"]
[37,"Delgado, J. F., et al. (2015). \"Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study.\" Clin Transplant 29(9): 771-780.",null,"Delgado, J. F., et al.","Health-related quality of life, social support, and caregiver burden between six and 120 months after heart transplantation: a Spanish multicenter cross-sectional study","A multicenter cross-sectional study was conducted to determine the current heart transplant (HTx) outcomes in Spain. Clinical and functional status, health-related quality of life (HRQoL), social support, and caregiver burden were analyzed in 303 adult transplant recipients (77.9% males) living with one functioning graft. Mean age at time of HTx (SD) was 56.4 (11.4) years, and the reason for transplantation in all patients was congestive heart failure. All patients had received a first heart transplant 6 (+/- 1), 12 (+/- 2), 36 (+/- 6), 60 (+/- 10), or 120 (+/- 20) months previously. Participants completed the Kansas City Cardiomyopathy Questionnaire (KCCQ), the EQ-5D, the Duke-UNC Functional Social Support Questionnaire, and the Zarit Caregiver Burden Scale. Reasonable HRQoL, social support, and caregiver burden levels were found at all time points, although a slight decrease in HRQoL was recorded at 120 months (p </= 0.033). Multivariate regression analyses showed that complications, comorbidities, and hospitalizations were associated with HRQoL (EQ-5D: 48.4% of explained variance, F4,164 = 38.46, p < 0.001; KCCQ overall summary score: 45.0%, F3,198 = 54.073, p < 0.001). Patient functional capabilities and complications affected caregiver burden (p < 0.05). In conclusion, HTx patients reported reasonable levels of HRQoL with low caregiver burden. Clinical variables related to these outcomes included functional status, complications, and number of admissions."," Clin Transplant 29(9): 771-780.","Spain",2015,"Cardiac",null,"Zarit,FSS","Adults","Observational",null,"Spain","Adults","Cardiac",null,"Observational",null,"Zarit,FSS","2015:2018"]
[38,"Dhooria, G. S., et al. (2017). \"Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome.\" J Paediatr Child Health 53(4): 354-357.",null,"Dhooria, G. S., et al.","Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome","AIM: Children with nephrotic syndrome (NS) have prolonged disease course with relapses requiring frequent visits and prolonged steroid therapy with their long-term concerns. All these factors affect the child and their families in many domains of functioning. The objective of this study was to assess multidimensional impact on families of children with nephrotic syndrome using (PedsQL) Family Impact Module (FIM). METHODS: This cross-sectional study was conducted in a paediatric nephrology clinic of a tertiary care hospital. Fifty cases of steroid-sensitive nephrotic syndrome between age group of 2-18 years were included, and equal age-sex matched healthy children were taken as controls. Baseline demographic factors including age, gender and education status, modified Kuppuswamy's socio-economic status were collected and clinical variables of NS cases were recorded. FIM is a parent-reported instrument that measures the impact of paediatric chronic health conditions on care giver's HRQOL and their family function. Mean FIM scores were compared among the cases and controls, and different predictive factors affecting family impact (FI) were analysed. RESULTS: The FI total score showed significantly lower scores in cases (mean score: 60.76 +/- 15.66) as compared to controls (mean 100). Among the individual groups, lowest scores were found in two domains, namely 'worry' and 'emotional function' with mean scores of 46.20 +/- 20.66 and 46.80 +/- 24.61, respectively, although other domains were also significantly affected. CONCLUSION: FI score should be evaluated in all cases of NS as parenting such children may significantly affect all domains of family functioning."," J Paediatr Child Health 53(4): 354-357.","India",2017,"Renal",null,"PedsQL-FIM","Children and Adolescents","Observational",null,"India","Children and Adolescents","Renal",null,"Observational",null,"PedsQL-FIM","2015:2018"]
[39,"Dolinar, R. M., et al. (2000). \"Pilot study of a home-based asthma health education program.\" Patient Educ Couns 40(1): 93-102.",null,"Dolinar, R. M., et al.","Pilot study of a home-based asthma health education program","OBJECTIVE: Caring for a child with asthma can affect the parent's coping and well-being and coping strategies. This study examined the influence of a home-based asthma health education program on parental coping and quality of life. DESIGN: Randomized controlled non-blinded clinical trial. SETTING: Northern community pediatrician's office. PATIENTS: Families whose children, under the age of 11, had chronic stable asthma, and who presented to the pediatrician's office for continuing care; those with an acute exacerbation of asthma were excluded. INTERVENTIONS: Families were randomly assigned to receive either a single two-hour, standardized home-based asthma health education session or a booklet representing conventional care. MAIN OUTCOME MEASURES: One and three-months following the intervention, assessments were obtained for coping measured by Hymovich's Parent Perception Inventory (PPI), quality of life measured by the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ) and change in asthma measured by the Caregiver Perception of Change (CPC) survey. RESULTS: Forty families were recruited and randomized; baseline characteristics were similar between groups. At the final follow-up, reduction in parental need for asthma information (p = 0.04), reduction in parental concerns (p = 0.02) and increased use of coping strategies (p = 0.04) were observed in the home-based care group. Improvement was noted in the parent's perception of their child's asthma in the home-based asthma education group (p = 0.01). Quality of life as measured by the PACQLQ remained unchanged over the intervention period (p > 0.05). CONCLUSIONS: These results suggest the use of a one-time, flexible, home-based intervention to assist families caring for children with asthma should be considered and appears effective."," Patient Educ Couns 40(1): 93-102.","Canada",2000,"Respiratory",null,"CPC","Children and Adolescents","RCT",null,"Canada","Children and Adolescents","Respiratory",null,"RCT",null,"CPC","2000:2004"]
[40,"Edwards, B. and L. Ung (2002). \"Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties.\" Cancer Nurs 25(5): 342-349.",null,"Edwards, B. and L. Ung","Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties","The quality of life of caregivers of patients with cancer is an important construct given the substantial impact of caring on the physical, psychological, social, and financial well-being of caregivers. Moreover, caring for patients with cancer also affects family functioning and places burdens on caregivers. The reliability and validity of instruments used to assess the quality of life of caregivers of patients with cancer were reviewed to aid in the selection of the most appropriate measures for research and practice. (1980-2000) and (1982-2000) searches located relevant quality of life instruments using the keywords \"cancer and quality of life\" and \"caregiver or spouse or partner.\" The search identified the following instruments: the Caregiver Quality of Life Index-Cancer Scale, the Caregiver Quality of Life Index, the Quality of Life Tool, and the Quality of Life Index-Cancer Version. Quality of life instruments developed specifically to measure the quality of life of caregivers of patients with cancer had the best psychometric properties. The Caregiver Quality of Life Index-Cancer Scale, in particular, met or exceeded minimum psychometric criteria for reliability and validity. The development of reliable and valid caregiver quality of life measures is an important factor in developing interventions to enhance quality of life of caregivers of patients with cancer."," Cancer Nurs 25(5): 342-349.","International",2002,"Cancer",null,"CQLI","Unspecified","SLR,Validation",null,"International","Unspecified","Cancer",null,"SLR,Validation",null,"CQLI","2000:2004"]
[41,"Elmstahl, S., et al. (1996). \"Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale.\" Arch Phys Med Rehabil 77(2): 177-182.",null,"Elmstahl, S., et al.","Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale","OBJECTIVE: To assess burden of caregivers to stroke patients three year after primary stroke and to test validity and reliability of a novel caregiver burden scale (CB scale). DESIGN: A longitudinal community-based 3-year follow-up study of 35 consecutive primary stoke patients initially admitted to an Acute Medical Unit (mean age 82 yr). The validity of the CB scale was studied in 150 patients (mean age 77 yr): 83 demented outpatients with stroke from a general geriatric day-care unit. Reliability was studied in another 23 outpatients (mean age 72 yr) with stroke from the same unit. METHODS: A 22-item CB scale for different types of caregiver burden and scales for neuroticism and extroversion (Eysenck Personality Inventory) and quality of life (11-item scale). Activities of daily life were assessed by a 6-item, scale, initially and 3 years later. OUTCOME MEASURE: Reliability and validity of the CB scale. Improvements of activities of daily life of stroke patients. RESULTS: Factor analyses of the CB scale gave five indices--general strain, isolation, disappointment, emotional involvement, and environment--having good kappa values, .89 to 1.00 and Cronbach's alpha, .70 to .87, except for environment. A higher burden was related to a closer relationship but not to the living situation. The highest caregiver burden was found among patients showing the greatest improvements of ADL, when divided into tertiles. The patient's degree of extroversion and quality of life were negatively correlated to caregiver burden, -.46(p < .05) and .59(p < .01). CONCLUSIONS: The CB scale proved to be a valid and reliable instrument to assess caregiver burden. To improve the caregiver situation, individual patient personality characteristics, like extroversion, feeling of quality of life, and progression of the disease, must be considered."," Arch Phys Med Rehabil 77(2): 177-182.","Sweden",1996,"Stroke",null,"CBS","Older Persons","Validation",null,"Sweden","Older Persons","Stroke",null,"Validation",null,"CBS","1995:1999"]
[42,"Fjaertoft, H., et al. (2004). \"Acute stroke unit care combined with early supported discharge. Long-term effects on quality of life. A randomized controlled trial.\" Clin Rehabil 18(5): 580-586.",null,"Fjaertoft, H., et al.","Acute stroke unit care combined with early supported discharge. Long-term effects on quality of life. A randomized controlled trial","OBJECTIVES: The aim of the present trial was to compare the effects of an extended stroke unit service (ESUS) with the effects of an ordinary stroke unit service (OSUS) on long-term quality of life (QoL). DESIGN: One year follow-up of a randomized controlled trial with 320 acute stroke patients allocated either to OSUS (160 patients) or ESUS (160 patients) with early supported discharge and follow-up by a mobile team. The intervention was a mobile team and close co-operation with the primary health care service. All assessments were blinded. MAIN OUTCOME MEASURE: Primary outcome of QoL in this paper was measured by the Nottingham Health Profile (NHP) at 52 weeks. Secondary outcomes measured at 52 weeks were differences between the groups measured by the Frenchay Activity Index, Montgomery-Asberg Depression Scale, Mini-Mental State Score and the Caregivers Strain Index. RESULTS: The ESUS group had a significantly better QoL (mean score 78.9) assessed by global NHP after one year than the OSUS group (mean score 75.2) (p =0.048). There were no significant differences between the groups in the secondary outcomes, but a trend in favour of ESUS. Caregivers Strain Index showed a mean score of 23.3 in the ESUS group and 22.6 in the OSUS group (p=0.089). CONCLUSION: It seems that stroke unit treatment combined with early supported discharge in addition to reducing the length of hospital stay can improve long-term QoL. However, similar trials are necessary to confirm the benefit of this type of service."," Clin Rehabil 18(5): 580-586.","Norway",2004,"Stroke",null,"CSI","Adults","RCT",null,"Norway","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[43,"Flynn Longmire, C. V., et al. (2014). \"Is sertraline treatment or depression remission in depressed Alzheimer patients associated with improved caregiver well being? Depression in Alzheimer's Disease Study 2.\" Am J Geriatr Psychiatry 22(1): 14-24.",null,"Flynn Longmire, C. V., et al.","Is sertraline treatment or depression remission in depressed Alzheimer patients associated with improved caregiver well being? Depression in Alzheimer's Disease Study 2","OBJECTIVE: We wanted to assess if sertraline treatment (versus placebo) or remission of depression at 12 weeks (versus nonremission) in Alzheimer patients is associated with improved caregiver well being. METHODS: We conducted a randomized, double-blind, placebo-controlled clinical trial of the efficacy and safety of sertraline for the treatment of depression in individuals with Alzheimer disease in five clinical research sites across the United States. Participants were caregivers of patients enrolled in the Depression in Alzheimer's Disease Study 2 (N = 131). All caregivers received standardized psychosocial support throughout the study. Caregiver outcome measures included depression (Beck Depression Inventory), distress (Neuropsychiatric Inventory), burden (Zarit Burden Interview), and quality of life (Medical Outcomes Study Short Form Health Survey). RESULTS: Fifty-nine percent of caregivers were spouses, 63.4% were women, and 64.1% were white. Caregivers of patients in both treatment groups had significant reductions in distress scores over the 24-week study period, but there was not a greater benefit for caregivers of patients taking sertraline. However, caregivers of patients whose depression was in remission at week 12 had greater declines in distress scores over the 24 weeks than caregivers of patients whose depression did not remit by week 12. CONCLUSION: Patient treatment with sertraline was not associated with significantly greater reductions in caregiver distress than placebo treatment. Distress but not level of depression or burden lessened for all caregivers regardless of remission status and even more so for those who cared for patients whose depression remitted. Results imply an interrelationship between caregiver distress and patient psychiatric outcomes."," Am J Geriatr Psychiatry 22(1): 14-24.","USA",2014,"Dementia",null,"Zarit","Older Persons","RCT",null,"USA","Older Persons","Dementia",null,"RCT",null,"Zarit","2010:2014"]
[44,"Forster, A., et al. (2009). \"Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study.\" Age Ageing 38(5): 576-583.",null,"Forster, A., et al.","Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study","BACKGROUND: national policy recommends routine re-assessment of disabled patients and their carers at 6 months after stroke onset. The clinical and resource outcomes of this policy were investigated. DESIGN: prospective, single-blind, randomised controlled trial in two centres. PARTICIPANTS: a total of 265 patients with a disabling stroke and their carers. INTERVENTIONS: a structured re-assessment system for patients and their carers at 6 months post-stroke or existing care. OUTCOME MEASURES: primary: patient independence (Frenchay activities index) and carer stress (general health questionnaire 28). Secondary: activities of daily living, mood state, satisfaction with services, carer strain index, health and social service resource use and costs. RESULTS: independence at 12 months post-stroke was similar in both groups (Frenchay activities index, adjusted mean difference 0.64; 95% confidence interval -0.74-2.02). Emotional distress in carers was similar in both groups (general health questionnaire 28, mean difference 0.02; 95% confidence interval -0.95-1.00). Results for the secondary outcome measures and total mean costs were similar for both groups. The intervention group patients used 301 fewer hospital bed days and 1,631 fewer care home bed days. CONCLUSIONS: the structured, systematic re-assessment for patients and their carers was not associated with any clinically significant evidence of benefit at 12 months. Health and social care resource use and mean cost per patient were broadly similar in both groups. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Register; number: ISRCTN55412871."," Age Ageing 38(5): 576-583.","UK",2009,"Stroke",null,"CSI","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CSI","2005:2009"]
[45,"Forster, A., et al. (2013). \"A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial.\" Health Technol Assess 17(46): 1-216.",null,"Forster, A., et al.","A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial","BACKGROUND: The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver. OBJECTIVE: To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective. DESIGN: A pragmatic, multicentre, cluster randomised controlled trial. SETTING: Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care. PARTICIPANTS: A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient. INTERVENTION: The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation. MAIN OUTCOME MEASURES: The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months. RESULTS: No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year. CONCLUSIONS: We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams. TRIAL REGISTRATION: Current Controlled Trials ISRCTN49208824. FUNDING: This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information."," Health Technol Assess 17(46): 1-216.","UK",2013,"Stroke",null,"CBS","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CBS","2010:2014"]
[46,"Forster, A., et al. (2013). \"A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.\" Lancet 382(9910): 2069-2076.",null,"Forster, A., et al.","A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis","BACKGROUND: Most patients who have had a stroke are dependent on informal caregivers for activities of daily living. The TRACS trial investigated a training programme for caregivers (the London Stroke Carers Training Course, LSCTC) on physical and psychological outcomes, including cost-effectiveness, for patients and caregivers after a disabling stroke. METHODS: We undertook a pragmatic, multicentre, cluster randomised controlled trial with a parallel cost-effectiveness analysis. Stroke units were eligible if four of five criteria used to define a stroke unit were met, a substantial number of patients on the unit had a diagnosis of stroke, staff were able to deliver the LSCTC, and most patients were discharged to a permanent place of residence. Stroke units were randomly assigned to either LSCTC or usual care (control group), stratified by geographical region and quality of care, and using blocks of size 2. Patients with a diagnosis of stroke, likely to return home with residual disability and with a caregiver providing support were eligible. The primary outcome for patients was self-reported extended activities of daily living at 6 months, measured with the Nottingham Extended Activities of Daily Living (NEADL) scale. The primary outcome for caregivers was self-reported burden at 6 months, measured with the caregivers burden scale (CBS). We combined patient and caregiver costs with primary outcomes and quality-adjusted life-years (QALYs) to assess cost-effectiveness. This trial is registered with controlled-trials.com, number ISRCTN 49208824. FINDINGS: We assessed 49 stroke units for eligibility, of which 36 were randomly assigned to either the intervention group or the control group. Between Feb 27, 2008, and Feb 9, 2010, 928 patient and caregiver dyads were registered, of which 450 were in the intervention group, and 478 in the control group. Patients' self-reported extended activities of daily living did not differ between groups at 6 months (adjusted mean NEADL score 27.4 in the intervention group versus 27.6 in the control group, difference -0.2 points [95% CI -3.0 to 2.5], p value=0.866, ICC=0.027). The caregiver burden scale did not differ between groups either (adjusted mean CBS 45.5 in the intervention group versus 45.0 in the control group, difference 0.5 points [95% CI -1.7 to 2.7], p value=0.660, ICC=0.013). Patient and caregiver costs were similar in both groups (length of the initial stroke admission and associated costs were pound13,127 for the intervention group and pound12,471 for the control group; adjusted mean difference pound1243 [95% CI -1533 to 4019]; p value=0.380). Probabilities of cost-effectiveness based on QALYs were low. INTERPRETATION: In a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training. FUNDING: Medical Research Council."," Lancet 382(9910): 2069-2076.","UK",2013,"Stroke",null,"CBS","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CBS","2010:2014"]
[47,"Garcia-Fernandez, F. P., et al. (2014). \"Effect of hospital case-manager nurses on the level of dependence, satisfaction and caregiver burden in patients with complex chronic disease.\" J Clin Nurs 23(19-20): 2814-2821.",null,"Garcia-Fernandez, F. P., et al.","Effect of hospital case-manager nurses on the level of dependence, satisfaction and caregiver burden in patients with complex chronic disease","AIMS AND OBJECTIVES: To determine the medium-term effects of nurse case management on the dependence and satisfaction of patients with complex chronic disease and on caregiver burden. BACKGROUND: Caregiver exhaustion increases the readmission rate of highly dependent patients with complex chronic disease and their consumption of primary care resources. DESIGN: An observational and analytical cohort study was undertaken in multimorbid patients. METHODS: Data were gathered on Barthel Index and Caregiver Burden Index scores, primary care resource consumption, readmission and mortality rates, and patient satisfaction with care and care continuity. Results were compared between nurse case-managed (n = 62) and control (n = 193) multimorbid patients using univariate and bivariate analyses. RESULTS: The study included 255 patients with complex chronic disease (24.32% in management cohort vs. 75.68% in control cohort). The nurse case-managed group had significantly lower Barthel Index and higher Caregiver Burden Index scores and a significantly longer hospital stay. At 90 days postdischarge, no significant intergroup differences were observed in Barthel Index or Caregiver Burden Index scores, primary care resource consumption, readmission rate or mortality rate; the case-managed patients showed a significantly higher satisfaction level with their care and its continuity. CONCLUSIONS: Nurse case management prevents a postdischarge increase in the dependence of multimorbid patients and the burden of their caregivers. RELEVANCE TO CLINICAL PRACTICE: Application of nurse case management can reduce the readmission rate and primary care consumption of patients with chronic complex disease after their hospital stay and prevent an exacerbation of caregiver exhaustion."," J Clin Nurs 23(19-20): 2814-2821.","Spain",2014,"Unspecified",null,"CBI","Unspecified","Observational",null,"Spain","Unspecified","Unspecified",null,"Observational",null,"CBI","2010:2014"]
[48,"Gauthier, A., et al. (2007). \"A longitudinal study on quality of life and depression in ALS patient-caregiver couples.\" Neurology 68(12): 923-926.",null,"Gauthier, A., et al.","A longitudinal study on quality of life and depression in ALS patient-caregiver couples","OBJECTIVES: To evaluate the modification of quality of life (QoL) and depression in a series of amyotrophic lateral sclerosis (ALS) patient-caregiver couples during a period of 9 months and compare them to patients' ALS Functional Rating Scale (ALS-FRS). METHODS: Depression was assessed with Zung Depression Scale (ZDS) and QoL with McGill Quality of Life Questionnaire (MQoL). Caregivers' burden was assessed with Caregiver Burden Inventory (CBI), and patients' feeling to be a burden with the Self-Perceived Burden Scale (SPBS). RESULTS: Thirty-one ALS patient-caregiver couples were interviewed at baseline and after 9 months. The mean ALS-FRS score was 28.7 (SD 7) at baseline and 24.1 (6.9) at the second interview (p = 0.0001). Patients' mean MQoL score slightly increased from 6.8 (1.6) to 7 (1.1) (p = 0.07); their ZDS score slightly increased (43.2 [8.7] at baseline and 45.7 [9.3] at the second interview) but they remained in the not depressed range. Caregivers' mean MQoL score slightly decreased, and their mean ZDS increased from 38.9 (8.1) to 42.2 (8.7) (p = 0.02). The mean CBI score increased from 50.3 (17.6) to 55.8 (16.4) (p = 0.03). CONCLUSIONS: We found a substantial steadiness of quality of life and depression in patients with amyotrophic lateral sclerosis over a 9-month period, vs a significant increase of burden and depression of their caregivers."," Neurology 68(12): 923-926.","Italy",2007,"ALS",null,"CBI","Unspecified","Observational",null,"Italy","Unspecified","ALS",null,"Observational",null,"CBI","2005:2009"]
[49,"Geng, D., et al. (2017). \"Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.\" J Clin Nurs 26(19-20): 3188-3199.",null,"Geng, D., et al.","Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study","AIMS AND OBJECTIVES: This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. BACKGROUND: Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. DESIGN: A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. METHODS: Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. RESULTS: Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. CONCLUSION: With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. RELEVANCE TO CLINICAL PRACTICE: Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients might benefit patients in China or other South-East Asian countries under the Confucian concept of ethics. There is an urgent demand to expand medical insurance coverage to cover amyotrophic lateral sclerosis in China and other developing countries. Long and adequate supports are needed for relieving caregiver's burden. To improve the quality of life of patients, relieving the patients' SBP and caregivers' burden is likely to be not only required, but also essential."," J Clin Nurs 26(19-20): 3188-3199.","China",2017,"ALS",null,"Zarit","Unspecified","Observational",null,"China","Unspecified","ALS",null,"Observational",null,"Zarit","2015:2018"]
[50,"Giovannetti, E. R., et al. (2009). \"Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients.\" Value Health 12(6): 1011-1017.",null,"Giovannetti, E. R., et al.","Construct validity of the Work Productivity and Activity Impairment questionnaire across informal caregivers of chronically ill older patients","OBJECTIVES: To assess the validity of the Work Productivity and Activity Impairment questionnaire as adapted for caregiving (WPAI:CG) to measure productivity loss (hours missed from work, impairment while at work, and impairment in regular activities) due to unpaid caregiving for medically complex older adults. METHODS: The WPAI:CG was administered along with the Caregiver Strain Index (CSI) and Center for Epidemiologic Studies Depression Scale (CESD) to a caregiving population (N = 308) enrolled with their older, medically complex care-recipient in a cluster-randomized controlled study. Correlation coefficients were calculated between each productivity variable derived from the WPAI:CG and CSI/CESD scores. Nonparametric tests for trend across ordered groups were carried out to examine the relationship between each productivity variable and the intensity of the caregiving. RESULTS: Significant positive correlations were found between work productivity loss and caregiving-related strain (r = 0.45) and depression (r = 0.30). Measures of productivity loss were also highly associated with caregiving intensity (P < 0.05) and care-recipient medical care use (P < 0.05). The average employed caregiver reported 1.5 hours absence from work in the previous week and 18.5% reduced productivity while at work due to caregiving. Employed and nonemployed caregivers reported 27.2% reduced productivity in regular activities in the previous week. CONCLUSION: The results indicate high convergent validity of the WPAI:CG questionnaire. This measure could facilitate research on the cost-effectiveness of caregiver-workplace interventions and provide employers and policy experts with a more accurate and comprehensive estimate of caregiving-related costs incurred by employers and society."," Value Health 12(6): 1011-1017.","USA",2009,"Unspecified",null,"CSI","Older Persons","Validation",null,"USA","Older Persons","Unspecified",null,"Validation",null,"CSI","2005:2009"]
[51,"Goncalves-Pereira, M., et al. (2017). \"Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ).\" Health Qual Life Outcomes 15(1): 63.",null,"Goncalves-Pereira, M., et al.","Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ)","BACKGROUND: The Zarit Burden Interview (ZBI) was originally developed to assess the level of subjective burden in caregivers of people with dementia. The Involvement Evaluation Questionnaire (IEQ) is amongst the leading scales to assess caregiving consequences in severe mental illness. We aimed to compare the psychometric properties of the ZBI, a generic tool, and of the IEQ, a more specific tool to assess the consequences of caregiving in schizophrenia and related disorders. METHODS: Secondary analyses of a 16-week, randomized controlled trial of a psychoeducational intervention in 223 primary caregivers of patients with schizophrenia or schizoaffective disorder. Psychometric properties (internal consistency, convergent and discriminative validity, and sensitivity to change) were evaluated for both ZBI and IEQ. RESULTS: Internal consistency was good and similar for both scales (ZBI: 0.91, 95% CI: 0.89, 0.94; IEQ: 0.86, 95% CI: 0.83, 0.89). Convergent validity was relevant for similar domains (e.g. ZBI total score vs IEQ-tension r = 0.69, 95% CI: 0.61, 0.75) and at least moderate for the rest of domains (ZBI total score, personal strain and role strain vs IEQ-urging and supervision). Discriminative validity against psychological distress and depressive symptoms was good (Area Under the Curve [AUC]: 0.77, 95% CI: 0.71, 0.83; and 0.69, 95% CI: 0.63, 0.78 - for ZBI against GHQ-28 and CES-D respectively; and AUC: 0.72, 95% CI: 0.65, 0.78; and 0.69, 95% CI: 0.62, 0.77 - for IEQ against GHQ-28 and CES-D respectively). AUCs against the reference criteria did not differ significantly between the two scales. After the intervention, both scales showed a significant decrease at endpoint (p-values < 0.001) with similar standardised effect sizes for change (-0.36, 95% CI: -0.58, -0.15 - for ZBI; -0.39, 95% CI: -0.60, -0.18 - for IEQ). CONCLUSIONS: Both ZBI and IEQ have shown satisfactory psychometric properties to assess caregiver burden in this sample. We provided further evidence on the performance of the ZBI as a general measure of subjective burden. TRIAL REGISTRATION: ( ISRCTN32545295 )."," Health Qual Life Outcomes 15(1): 63.","Portugal,Spain",2017,"Psychiatric",null,"Zarit,IEQ","Unspecified","Validation",null,"Portugal,Spain","Unspecified","Psychiatric",null,"Validation",null,"Zarit,IEQ","2015:2018"]
[52,"Goranitis, I., et al. (2014). \"An investigation into the construct validity of the Carer Experience Scale (CES).\" Qual Life Res 23(6): 1743-1752.",null,"Goranitis, I., et al.","An investigation into the construct validity of the Carer Experience Scale (CES)","PURPOSE: The Carer Experience Scale (CES) is an index measure of the caring experience, focusing on six domains: activities outside caring, support from family and friends, assistance from the government and other organizations, fulfilment from caring, control over caring and getting on with the care recipient. This is an initial study of the construct validity of the CES focusing on validity in a heterogeneous group of carers in the UK. METHODS: The CES was included in a cross-sectional quality of life survey conducted in a UK city in 2010. The survey included a number of questions about the characteristics of the carer, care recipient, caring situation and motivation for caring. Hypotheses regarding the anticipated associations between these contextual variables and the caring experience were developed and statistically tested. RESULTS: Seven hundred and thirty carers fully completed the CES questionnaire. Associations between variables hypothesised to relate to the caring experience (such as recipient health and intensity of caring) and the CES were largely as expected, providing evidence that the CES captures the caring experience in a valid way. Most hypothesised associations were statistically significant in both carers of older and younger adults. CONCLUSIONS: This study provides early encouraging evidence for the construct validity of the CES instrument. Further investigation is required to examine the validity of the CES in specific clinical subgroups and to examine the responsiveness of the CES in detecting changes in the carer's outcomes over time."," Qual Life Res 23(6): 1743-1752.","UK",2014,"Unspecified",null,"CExS","Adults","Validation",null,"UK","Adults","Unspecified",null,"Validation",null,"CExS","2010:2014"]
[53,"Goursand, D., et al. (2009). \"Family Impact Scale (FIS): psychometric properties of the Brazilian Portuguese language version.\" Eur J Paediatr Dent 10(3): 141-146.",null,"Goursand, D., et al.","Family Impact Scale (FIS): psychometric properties of the Brazilian Portuguese language version","AIM: Evaluate the psychometric properties of the Brazilian version of the Family Impact Scale (FIS). METHODS: Following translation and cross-cultural adaptation, the FIS was tested on 123 parents-caregivers of children between 11 and 14 years of age with dental caries and malocclusions. The parents were recruited from the Paediatric Dental and Orthodontic clinics where their children were receiving dental care. Psychometric properties were assessed through internal consistency, test-retest reliability, construct validity and discriminant validity. RESULTS: The mean FIS score was 6.97 (SD 7.81) for the dental caries group and 7.25 (SD 7.70) for the malocclusion group. The FIS score was unable to discriminate different family impact caused by children's oral health conditions. Internal consistency was confirmed by a Cronbach's alpha coefficient of 0.79. Test-retest reliability revealed good reproducibility (ICC 0.83). Construct validity was good, demonstrating highly significant correlations between parent's perceptions regarding the overall wellbeing indicator for their children and the total FIS and subscales. Financial burden demonstrated no significant correlation with global indicators. CONCLUSIONS: Overall psychometric results for the Brazilian version of the FIS confirm it as a reliable, valid questionnaire for assessing the family impact caused by children's oral conditions."," Eur J Paediatr Dent 10(3): 141-146.","Brazil",2009,"Oral Health",null,"FIS","Children and Adolescents","Validation",null,"Brazil","Children and Adolescents","Oral Health",null,"Validation",null,"FIS","2005:2009"]
[54,"Govina, O., et al. (2013). \"Validation of the revised Bakas Caregiving Outcomes Scale in Greek caregivers of patients with advanced cancer receiving palliative radiotherapy.\" Support Care Cancer 21(5): 1395-1404.",null,"Govina, O., et al.","Validation of the revised Bakas Caregiving Outcomes Scale in Greek caregivers of patients with advanced cancer receiving palliative radiotherapy","PURPOSE: Caregiver burden considerably affects the lives of families providing care to people with advanced cancer. The aim of this study was to validate the Greek translation of the revised Bakas Caregiving Outcomes Scale (BCOS) with a sample of informal caregivers of people with advanced cancer receiving outpatient palliative radiotherapy. METHODS: Following a formal \"forward-backward\" method to translate the original BCOS into Greek, the scale was administered to 100 consecutive family caregivers. Participants also completed the Greek Hospital Anxiety and Depression Scale (G-HADS) and five quality-of-life related linear analogue scale assessment (LASA) scales. Validity and reliability analyses were performed. RESULTS: The Cronbach's alpha coefficient for the total BCOS score was 0.83. Test-retest reliability analysis in a subgroup of caregivers (n = 40) revealed good short-term stability over a 2-week interval. Exploratory factor analysis generated a one-factor structure for the Greek translation, which was further confirmed through confirmatory factor analysis. Construct validity was supported through the scale's high correlations with G-HADS anxiety (-0.524; p < 0.001) and depression (-0.533; p < 0.001) scores, and LASA quality of life scores (0.696; p < 0.001). The BCOS discriminated well between groups of caregivers with different levels of quality of life. A total score of 52.5 offered high sensitivity (91 %) and specificity (86 %) in detecting highly burdened caregivers. CONCLUSIONS: The Greek version of the BCOS is a psychometrically sound instrument that can be usefully implemented into clinical practice to identify family caregivers in need for support, and stimulate relevant research in our country."," Support Care Cancer 21(5): 1395-1404.","Greece",2013,"Cancer",null,"BCOS","Unspecified","Validation",null,"Greece","Unspecified","Cancer",null,"Validation",null,"BCOS","2010:2014"]
[55,"Griva, K., et al. (2016). \"Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis.\" Qual Life Res 25(2): 373-384.",null,"Griva, K., et al.","Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis","PURPOSE: Assisted peritoneal dialysis (PD) involving caregivers allows more patients to get started on home-based dialysis with good clinical outcomes, but evidence on patient-reported and caregiver-reported outcomes is lacking. This study aimed to compare assisted PD versus self-care PD on quality of life (QoL) and psychosocial outcomes for patients and caregivers. The effect of PD modality [automated PD (APD); continuous ambulatory PD (CAPD)] in relation to self-care or assisted care was also examined. METHODS: A cross-sectional sample of 231 PD patients [142 self-care (57 APD/85 CAPD) and 89 assisted care PD (45 APD/44 CAPD)], 72 caregivers of assisted PD patients and 39 family members of self-care PD patients completed the Kidney Disease Quality of Life Short Form (KDQOL-SF), World Health Organisation Quality of Life Instrument-brief and the Hospital Anxiety and Depression Scale. Caregivers and family members completed the Lay Care-Giving for Adults Receiving Dialysis questionnaire and Zarit Burden Interview. RESULTS: Case-mix-adjusted comparisons indicated comparable QoL in all dimensions with the exception of physical SF-12 (p = .001) and the KDQOL effects of kidney disease in favour of self-care PD. Levels of anxiety (9.72 +/- 4.90; 8.25 +/- 5.22) and depression (8.63 +/- 3.80; 6.35 +/- 4.76) were equivalent in assisted PD and self-care PD, respectively. Assisted PD caregivers reported more task-orientated duties (p = .007), yet levels of perceived burden were equal to those reported by family members of self-care PD. CONCLUSION: Our findings of mostly comparable patient and caregiver outcomes in assisted PD and self-care PD suggest that caregiver burden and QoL should not be a barrier to using assisted PD."," Qual Life Res 25(2): 373-384.","Singapore",2016,"Renal",null,"Zarit","Adults","Observational",null,"Singapore","Adults","Renal",null,"Observational",null,"Zarit","2015:2018"]
[56,"Grunfeld, E., et al. (2004). \"Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers.\" Cmaj 170(12): 1795-1801.",null,"Grunfeld, E., et al.","Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers","BACKGROUND: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. METHODS: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score < or = 50). RESULTS: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. INTERPRETATION: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving."," Cmaj 170(12): 1795-1801.","Canada",2004,"Cancer",null,"Zarit","Adults","Observational",null,"Canada","Adults","Cancer",null,"Observational",null,"Zarit","2000:2004"]
[57,"Gunnell, D., et al. (2000). \"How great a burden does early discharge to hospital-at-home impose on carers? A randomized controlled trial.\" Age Ageing 29(2): 137-142.",null,"Gunnell, D., et al.","How great a burden does early discharge to hospital-at-home impose on carers? A randomized controlled trial","OBJECTIVE: to assess the effects of an early discharge hospital-at-home scheme on self-reported carer strain and quality of life. DESIGN: a randomized controlled trial SETTING: Bristol, UK. SUBJECTS: 133 carers of patients receiving either early discharge from hospital to hospital-at-home (n = 93) care or usual hospital care and discharge (n = 40). OUTCOME MEASURES: modified 12-item Carer Strain Index, COOP-WONCA charts and EuroQol EQ-5D at 4 weeks and 3 months post-randomization. RESULTS: the mean age of carers was 65 years; 56% were women. There were no marked differences between the groups in any of the outcomes used at either 4-week or 3-month follow-up. CONCLUSION: there was no evidence of increased self-reported burden imposed on carers of patients discharged early from hospital. Decisions on the implementation of hospital-at-home schemes should be influenced by considerations of cost and effectiveness rather than effects on carers. The effects on carers may, however, differ for other forms of home-based care."," Age Ageing 29(2): 137-142.","UK",2000,"Unspecified",null,"CSI","Unspecified","RCT",null,"UK","Unspecified","Unspecified",null,"RCT",null,"CSI","2000:2004"]
[58,"Gustavsson, A., et al. (2010). \"Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study.\" J Nutr Health Aging 14(8): 648-654.",null,"Gustavsson, A., et al.","Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study","OBJECTIVES: This study aimed to estimate the costs of formal and informal care of patients with Alzheimer's disease, to compare care costs across European countries and identify potential differences in cost patterns between countries and regions. SETTING: The ICTUS study is a prospective, naturalistic observational study conducted in specialised memory clinics in 12 European countries. In total, 1385 patients diagnosed with Alzheimer's disease were enrolled at baseline. All subjects had a reliable informant (primary caregiver) and informed consent was obtained from patients or their primary caregiver. MAIN OUTCOME MEASURES: Resource utilization data was captured with the RUD Lite (Resource Utilization in Dementia) instrument and caregiver burden with the Zarit Burden Interview (ZBI). Patient disease severity was measured with the Mini-Mental State Examination (MMSE), Alzheimer's Disease Assessment Scale-Cognitive subscale (ADAS-cog), Katz index (PADL), Instrumental activities of daily living (IADL) scale and Neuropsychiatric inventory (NPI). RESULTS: The mean annual cost of care per patient was estimated to euro7,820 (95% CI: euro7,194-euro8,446), whereof 54% were costs of informal care, 16% direct medical costs and 30% community care costs. There were substantial differences in total resource utilization and also in the balance between formal and informal care between Northern, Western and Southern Europe. PADL scores were strongly associated with formal care costs while IADL scores correlated strongly with informal care costs. CONCLUSIONS: Costs of Alzheimer's disease are high across European countries. Activities of daily living is an important determinant of care costs. Formal care service use is lower and informal care higher in Southern Europe compared to Western and Northern Europe. Differences in resource utilization patterns are important to consider in international studies of dementia care costs as well as in economic evaluations of new treatments for dementia."," J Nutr Health Aging 14(8): 648-654.","UK",2010,"Dementia",null,"Zarit","Older Persons","Observational",null,"UK","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[59,"Hakkaart-van Roijen, L., et al. (2013). \"Economic evaluation alongside a single RCT of an integrative psychotherapeutic nursing home programme.\" BMC Health Serv Res 13: 370.",null,"Hakkaart-van Roijen, L., et al.","Economic evaluation alongside a single RCT of an integrative psychotherapeutic nursing home programme","BACKGROUND: There is an 80% prevalence of two or more psychiatric symptoms in psychogeriatric patients. Multiple psychiatric symptoms (MPS) have many negative effects on quality of life of the patient as well as on caregiver burden and competence. Irrespective of the effectiveness of an intervention programme, it is important to take into account its economic aspects. METHODS: The economic evaluation was performed alongside a single open RCT and conducted between 2001 and 2006. The patients who met the selection criteria were asked to participate in the RCT. After the patient or his caregiver signed a written informed consent form, he was then randomly assigned to either IRR or UC.The costs and effects of IRR were compared to those of UC. We assessed the cost-utility of IRR as well as the cost-effectiveness of both conditions. Primary outcome variable: severity of MPS (NPI) of patients; secondary outcome variables: general caregiver burden (CB) and caregiver competence (CCL), quality of life (EQ5D) of the patient, and total medical costs per patient (TiC-P). Cost-utility was evaluated on the basis of differences in total medical costs). Cost-effectiveness was evaluated by comparing differences of total medical costs and effects on NPI, CB and CCL (Incremental Cost-Effectiveness Ratio: ICER). CEAC-analyses were performed for QALY and NPI-severity. All significant testing was fixed at p<0.05 (two-tailed). The data were analyzed according to the intention-to-treat (ITT)-principle. A complete cases approach (CC) was used. RESULTS: IRR turned out to be non-significantly, 10.5% more expensive than UC (euro 36 per day). The number of QALYs was 0.01 higher (non-significant) in IRR, resulting in euro 276,290 per QALY. According to the ICER-method, IRR was significantly more cost-effective on NPI-sum-severity of the patient (up to 34%), CB and CCL (up to 50%), with ICERs varying from euro 130 to euro 540 per additional point of improvement. CONCLUSIONS: No significant differences were found on QALYs. In IRR patients improved significantly more on severity of MPS, and caregivers on general burden and competence, with incremental costs varying from euro 130 to euro 540 per additional point of improvement. The surplus costs of IRR are considered acceptable, taking into account the high societal costs of suffering from MPS of psychogeriatric patients and the high burden of caregivers. The large discrepancy in economic evaluation between QALYs (based on EQ5D) and ICERs (based on clinically relevant outcomes) demands further research on the validity of EQ5D in psychogeriatric cost-utility studies. (Trial registration nr.: ISRCTN 38916563; December 2004)."," BMC Health Serv Res 13: 370.","Netherlands",2013,"Psychiatric",null,"CBS,CCL","Older Persons","RCT",null,"Netherlands","Older Persons","Psychiatric",null,"RCT",null,"CBS,CCL","2010:2014"]
[60,"Harkness, K. I. and J. E. Tranmer (2007). \"Measurement of the caregiving experience in caregivers of persons living with heart failure: a review of current instruments.\" J Card Fail 13(7): 577-587.",null,"Harkness, K. I. and J. E. Tranmer","Measurement of the caregiving experience in caregivers of persons living with heart failure: a review of current instruments","BACKGROUND: Current evidence suggests that caring for someone with heart failure (HF) often imposes physical and emotional demands on primary caregivers that may lead to emotional distress or impaired quality of life. The purpose of this literature review was to provide a comprehensive description of the measurement tools used for assessing the subjective experience of primary caregivers for persons living with HF. METHODS: CINHAL, MEDLINE, EMBASE, PsychINFO, the Cochrane Collaboration, and PubMed databases (1985 to June 2006) were searched for studies that directly measured the caregiving experience. RESULTS: Seven studies yielding 6 different instruments were reviewed. The majority of studies were cross-sectional, descriptive, and correlational designs. Caregivers were predominately female spouses with a mean age ranging from 54 to 63 years. CONCLUSIONS: Limitations in study designs and nonstandardized approaches to measurement of caregiving limit the ability to confidently recommend a specific existing tool for measuring this construct in the population with HF. However, on the basis of the results from this review, the Caregiver Reaction Assessment tool seems to have the greatest potential for quantitatively measuring the subjective experience of caregiving in HF. Its ease of administration, strong psychometric properties in the medical populations, and attention to the positive and negative experiences associated with caregiving make it a most promising generic tool."," J Card Fail 13(7): 577-587.","International",2007,"Cardiac",null,"CRA","Adults","SLR",null,"International","Adults","Cardiac",null,"SLR",null,"CRA","2005:2009"]
[61,"Harkness, K., et al. (2013). \"The measurement of uncertainty in caregivers of patients with heart failure.\" J Nurs Meas 21(1): 23-42.",null,"Harkness, K., et al.","The measurement of uncertainty in caregivers of patients with heart failure","BACKGROUND AND PURPOSE: Family caregivers of heart failure (HF) patients describe feelings of uncertainty; however, studies measuring uncertainty in caregivers of HF patients are extremely sparse. This study examined the validity and reliability of the Mishel Uncertainty in Illness Scale-Family Member form (PPUS-FM) in caregivers of HF patients. METHODS: Caregivers (n = 50) of community-dwelling HF patients completed the PPUS-FM, Caregiver Reaction Assessment (CRA) and Hospital Anxiety and Depression Scale (HADS) in this cross-sectional study. RESULTS: Significant correlations emerged among PPUS-FM and (a) CRA-schedule burden (p = .499, p < .01); (b) CRA-financial burden (p = .292, p < .05); (c) CRA-family burden (p = .385, p < .01); (d) CRA-health burden (p = .421; p < .01); and (e) HADS-depression scores (p = -.298, p <.05). Cronbach's alpha for the PPUS-FM was .89. CONCLUSIONS: In this sample, the PPUS-FM had some evidence of construct validity and good internal consistency. However, the respondent burden and unidimensional nature of the PPUS-FM suggest that this tool needs further revision and testing for use with caregivers of HF patients."," J Nurs Meas 21(1): 23-42.","Canada",2013,"Cardiac",null,"CRA","Adults","Validation",null,"Canada","Adults","Cardiac",null,"Validation",null,"CRA","2010:2014"]
[62,"Haro, J. M., et al. (2014). \"Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours.\" J Nutr Health Aging 18(7): 677-684.",null,"Haro, J. M., et al.","Analysis of burden in caregivers of people with Alzheimer's disease using self-report and supervision hours","OBJECTIVES: This study aimed to describe the baseline characteristics of informal carers of community-living Alzheimer's disease (AD) patients by AD severity group and to identify factors associated with two measures of caregiver burden. DESIGN AND SETTING: GERAS is a prospective observational study in France, Germany, and the UK, designed to assess costs and resource use associated with AD, for patients and their caregivers, stratified by disease severity. PARTICIPANTS: 1497 community-dwelling AD patients and their primary caregivers. MEASUREMENTS: Subjective caregiver burden assessed using the Zarit Burden Interview [ZBI] and time spent supervising patients (an objective measure of burden recorded using the Resource Utilization in Dementia instrument) during the month before the baseline visit were recorded. Separate multiple linear regression analyses using ZBI total score and caregiver supervision time as dependent variables were performed to identify patient and caregiver factors independently associated with caregiver burden. RESULTS: Increasing AD severity was associated with both subjective caregiver burden (ZBI total score) and overall caregiver time, which includes supervision time (both p<0.001, ANOVA). Better patient functioning (on instrumental activities of daily living) was independently associated with both a lower ZBI total score and less supervision time, whereas higher levels of caregiver distress due to patient behavior were associated with greater caregiver burden. Other factors independently associated with an increased ZBI total score included younger caregiver age, caregiver self-reported depression, caring for a male patient, and longer time since AD diagnosis. Caregivers living with the patient, being a male caregiver, patient living in a rural location, higher patient behavioral problem subdomain scores for apathy and psychosis, more patient emergency room visits, not receiving food delivery and receiving financial support for caregiving were all associated with greater caregiver supervision time. CONCLUSION: Our results show that subjective caregiver burden and caregiver time are influenced by different factors, reinforcing the need to consider both aspects of caregiving when trying to minimize the burden of AD. However, interventions that minimize caregiver distress and improve patient functioning may impact on both subjective and objective burden."," J Nutr Health Aging 18(7): 677-684.","France,Germany,UK",2014,"Dementia",null,"Zarit","Older Persons","Observational",null,"France,Germany,UK","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[63,"Harris, R., et al. (2005). \"The effectiveness, acceptability and costs of a hospital-at-home service compared with acute hospital care: a randomized controlled trial.\" J Health Serv Res Policy 10(3): 158-166.",null,"Harris, R., et al.","The effectiveness, acceptability and costs of a hospital-at-home service compared with acute hospital care: a randomized controlled trial","OBJECTIVE: To compare the safety, effectiveness, acceptability and costs of a hospital-at-home programme with usual acute hospital inpatient care. METHOD: Patients aged 55 years or over being treated for an acute medical problem were randomized to receive either standard inpatient hospital care or hospital-at-home care. Follow-up was for 90 days after randomization. Health outcome measures included physical and mental function, self-rated recovery, health status as assessed by the SF-36, adverse events and readmissions to hospital. Acceptability was assessed using satisfaction surveys and the Carer Strain Index. Costs comprised hospital care, care in the home, community services, general practitioner services and personal health care expenses. RESULTS: In all, 285 people were randomized with a mean age of 80 years. There were no significant differences in health outcome measures between the two randomized groups. Significantly more patients receiving care at home reported high levels of satisfaction, as did more of their relatives. Relatives of the care-at-home group also reported significantly lower scores on the Carer Strain Index. However, the mean cost per patient was almost twice for patients treated at home (NZ 6524 dollars) as for standard hospital care (NZ 3525 dollars). A sensitivity analysis indicated that, if the service providing care in the home had been operating at full capacity, the mean cost per patient episode would have been similar for both modes of care. CONCLUSIONS: This hospital-at-home programme was found to be more acceptable and as effective and safe as inpatient care. While caring for patients at home was significantly more costly than standard inpatient care, this was largely due to the hospital-at-home programme not operating at full capacity."," J Health Serv Res Policy 10(3): 158-166.","New Zealand",2005,"Unspecified",null,"CSI","Older Persons","RCT",null,"New Zealand","Older Persons","Unspecified",null,"RCT",null,"CSI","2005:2009"]
[64,"Harwood, M., et al. (2012). \"Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life--a randomized controlled trial.\" Clin Rehabil 26(6): 493-501.",null,"Harwood, M., et al.","Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life--a randomized controlled trial","OBJECTIVE: Few community interventions following stroke enhance activity, participation or quality of life. We tested two novel community interventions designed to promote self-directed rehabilitation following stroke. DESIGN: This was a randomized, controlled parallel group 2x2 trial. SETTING: Community. PARTICIPANTS: Maori and Pacific New Zealanders, >15 years old, randomized within three months of a new stroke. INTERVENTIONS: A DVD of four inspirational stories by Maori and Pacific people with stroke and a 'Take Charge Session'--a single structured risk factor and activities of daily living assessment, designed to facilitate self-directed rehabilitation. MAIN MEASURES: Primary outcomes were Health-related Quality of Life (Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the Short Form 36 (SF-36)) 12 months from randomization. Secondary outcomes were Barthel Index, Frenchay Activities Index, Carer Strain Index and modified Rankin score. RESULTS: One hundred and seventy-two people were randomized with 139 (80.8%) followed up at 12 months post randomization. The effect of the Take Charge Session on SF-36 PCS at 12 months was 6.0 (95% confidence interval (CI) 2.0 to 10.0) and of the DVD was 0.9 (95% CI -3.1 to 4.9). Participants allocated to the Take Charge Session were less likely to have a modified Rankin score of >2 (odds ratio (OR) 0.42, 95% CI 0.2 to 0.89) and their carers had lower (better) Carer Strain Index scores (-1.5, 95% CI -2.8 to -0.1). CONCLUSION: A simple, low-cost intervention in the community phase of stroke recovery aiming to promote self-directed rehabilitation improved outcomes."," Clin Rehabil 26(6): 493-501.","New Zealand",2012,"Stroke",null,"CSI","Adults","RCT",null,"New Zealand","Adults","Stroke",null,"RCT",null,"CSI","2010:2014"]
[65,"Hastrup, L. H., et al. (2011). \"Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses.\" Scand J Public Health 39(6): 598-607.",null,"Hastrup, L. H., et al.","Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses","AIMS: This study investigates a possible added subjective burden among informal caregivers to care recipients with a mental illness or a combination of mental and somatic illnesses compared with caregivers to care recipients with a somatic illness. The study also investigates the subjective caregiver burden by caregivers' characteristics and objective burden. METHODS: The association between subjective caregiver burden and socio-demographic factors, objective burden, and health-related quality of life was analyzed in a population of 865 Dutch informal caregivers, using multiple linear regression analysis. RESULTS: Controlling for other factors in the analysis, we found that caring for a recipient with mental illness or a combination of mental and somatic illness was associated with an extra subjective caregiver burden (measured by Caregiver Strain Index). Objective burden, in terms of more than 50 hours of care provision per week, less than three years of caregiving, or living together with the care recipients was associated with higher subjective caregiver burden. Other factors associated with higher subjective caregiver burden were being partners or a child of care recipient, having a paid job, a low health-related quality of life (EQ-5D), or having an illness. CONCLUSIONS: This study suggests that caregivers to care recipients with a mental and especially a combination of mental and somatic illnesses have a higher subjective caregiver burden compared with caregivers to care recipients with a somatic illness. Because the study is not representative of all caregivers, more research focusing on identifying and contacting informal caregivers is needed to confirm the result."," Scand J Public Health 39(6): 598-607.","Netherlands",2011,"Psychiatric",null,"CSI","Children and Adolescents","Observational",null,"Netherlands","Children and Adolescents","Psychiatric",null,"Observational",null,"CSI","2010:2014"]
[66,"Hoefman, R. J., et al. (2011). \"Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care.\" Aging Ment Health 15(8): 1018-1027.",null,"Hoefman, R. J., et al.","Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care","OBJECTIVES: This study analyses feasibility, construct validity and test-retest reliability of the Care-related Quality of Life (CarerQol)-instrument among informal caregivers of long-term care (LTC) users. The CarerQol measures the impact of informal care by assessing happiness (CarerQol-VAS) and describing burden dimensions (CarerQol-7D). METHODS: Data was gathered among informal caregivers of patients obtaining day care or living in a LTC facility in the Netherlands with two questionnaires sent with a two-week interval (n test = 108, n retest = 100). Percentages of missing values indicated feasibility of the CarerQol. Construct validity assessed the extent to which differences in background characteristics were reflected in happiness scores (CarerQol-VAS) with univariate and multivariate statistics. Additionally, construct validity was tested with assessing the correlation between the CarerQol and the Self-Rated Burden (SRB) scale. Percentages of complete agreement between CarerQol scores at test and retest, Cohen's kappa coefficients (kappa value) and Intraclass Correlation Coefficients (ICCs) were used to assess reliability. RESULTS: In this study, 3.7% was missing on the CarerQol. CarerQol-VAS was positively associated with caregivers' age and health, and negatively with SRB score. The percentage of complete agreement of CarerQol-VAS between the measure moments was 60% and between 76% and 96% for CarerQol-7D. kappa value and ICC of CarerQol-VAS were 0.52 and 0.86, and ranged between 0.55 and 0.94 for CarerQol-7D. CONCLUSION: The CarerQol measures the impact of informal care among carers of LTC users in a feasible, valid and reliable way."," Aging Ment Health 15(8): 1018-1027.","Netherlands",2011,"Unspecified",null,"CarerQol","Older Persons","Validation",null,"Netherlands","Older Persons","Unspecified",null,"Validation",null,"CarerQol","2010:2014"]
[67,"Hoefman, R. J., et al. (2017). \"Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US.\" Pharmacoeconomics 35(4): 469-478.",null,"Hoefman, R. J., et al.","Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US","BACKGROUND: Informal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which measures the impact of informal care on seven important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The CarerQol can be included at the effect side of multi-criteria analyses of patient interventions or in cost-effectiveness or utility analysis of interventions targeted at caregivers. OBJECTIVE: At present, utility scores based on relative utility weights for the CarerQol-7D are only available for the Netherlands. This study calculates CarerQol-7D tariffs for Australia, Germany, Sweden, UK, and US. METHODS: Data were collected among the general population in Australia, Germany, Sweden, UK, and US by an Internet survey. Utility weights were collected with a discrete choice experiment with two unlabeled alternatives described in terms of the seven CarerQol-7D dimensions. An efficient experimental design with priors obtained from the Netherlands was used to create the choice sets. Data was analyzed with a panel mixed multinomial logit model with random parameters. RESULTS: In all five countries, the CarerQol-7D dimensions were significantly associated with the utility of informal care situations. Physical health problems were most strongly associated with the utility for informal care situations. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions for each country separately. CONCLUSION: The CarerQol tariffs for Australia, Germany, Sweden, UK, and US facilitate the inclusion of informal care in economic evaluations."," Pharmacoeconomics 35(4): 469-478.","Australia,Germany,Sweden,UK,USA",2017,"Unspecified",null,"CarerQol","Unspecified","Validation",null,"Australia,Germany,Sweden,UK,USA","Unspecified","Unspecified",null,"Validation",null,"CarerQol","2015:2018"]
[68,"Hoefman, R., et al. (2015). \"Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations.\" Qual Life Res 24(5): 1255-1273.",null,"Hoefman, R., et al.","Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations","PURPOSE: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care. METHODS: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied. RESULTS: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers' and care recipients' health status and duration of caregiving were negatively associated with caring experiences. CONCLUSIONS: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving."," Qual Life Res 24(5): 1255-1273.","Australia",2015,"End of life",null,"CSI,CExS,CarerQol","Unspecified","Validation",null,"Australia","Unspecified","End of life",null,"Validation",null,"CSI,CExS,CarerQol","2015:2018"]
[69,"Hoffmann, T., et al. (2010). \"Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?\" Top Stroke Rehabil 17(2): 119-127.",null,"Hoffmann, T., et al.","Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?","PURPOSE: Telephone interviews may be a cost-effective alternative to administering stroke outcome measures for people who are living in the community following a stroke, but there is a lack of research that has compared the different modes of administering outcome measures. The aim of this study was to determine whether telephone administration of selected stroke outcome measures resulted in significantly different results to face-to-face administration of the same outcome measures. METHOD: Nineteen participants who were taking part in a randomised controlled trial (RCT) evaluating the effectiveness of a postdischarge education and support package for stroke patients and their carers were recruited for this study. Participants had the RCT follow-up outcome measures, at 3 months post discharge, administered by both telephone and face-to-face. Participants were randomised to receive either the telephone or face-to-face administration first and a period of 2 weeks separated the two administrations. Outcome measures were the Knowledge of Stroke Questionnaire, a stroke self-efficacy questionnaire, Hospital Anxiety and Depression Scale, Stroke and Aphasia Quality of Life Scale, and the Caregiver Strain Index. RESULTS: There were no significant differences between scores obtained on any of the outcome measures that were administered by telephone and face-to-face (P > .05). CONCLUSION: The telephone can be used to administer the outcome measures that were evaluated in this study to stroke patients and carers. These findings may be of benefit to stroke researchers and clinicians who wish to incorporate the use of telephone measures into the follow-up care of stroke patients and their carers."," Top Stroke Rehabil 17(2): 119-127.","Australia",2010,"Stroke",null,"CSI","Adults","RCT",null,"Australia","Adults","Stroke",null,"RCT",null,"CSI","2010:2014"]
[70,"Hummel, J., et al. (2017). \"AIDE-Acute Illness and Depression in Elderly Patients. Cognitive Behavioral Group Psychotherapy in Geriatric Patients With Comorbid Depression: A Randomized, Controlled Trial.\" J Am Med Dir Assoc 18(4): 341-349.",null,"Hummel, J., et al.","AIDE-Acute Illness and Depression in Elderly Patients. Cognitive Behavioral Group Psychotherapy in Geriatric Patients With Comorbid Depression: A Randomized, Controlled Trial","BACKGROUND: Comorbid depression is highly prevalent in geriatric patients and associated with functional loss, frequent hospital re-admissions, and a higher mortality rate. Cognitive behavioral psychotherapy (CBT) has shown to be effective in older depressive patients living in the community. To date, CBT has not been applied to older patients with acute physical illness and comorbid depression. OBJECTIVES: To evaluate the effectiveness of CBT in depressed geriatric patients, hospitalized for acute somatic illness. DESIGN: Randomized controlled trial with waiting list control group. SETTING: Postdischarge intervention in a geriatric day clinic; follow-up evaluations at the patients' homes. PARTICIPANTS: A total of 155 randomized patients, hospitalized for acute somatic illness, aged 82 +/- 6 years and suffering from depression [Hospital Anxiety and Depression Scale (HADS) scores >7]. Exclusion criteria were dementia, delirium, and terminal state of medical illness. INTERVENTION: Fifteen, weekly group sessions based on a CBT manual. Commencement of psychotherapy immediately after discharge in the intervention group and a 4-month waiting list interval with usual care in the control group. MEASUREMENTS: HADS depression total score after 4 months. Secondary endpoints were functional, cognitive, psychosocial and physical status, resource utilization, caregiver burden, and amount of contact with physician. RESULTS: The intervention group improved significantly in depression scores (HADS baseline 18.8; after 4 months 11.4), whereas the control group deteriorated (HADS baseline 18.1; after 4 months 21.6). Significant improvement in the intervention group, but not in the control group, was observed for most secondary outcome parameters such as the Barthel and Karnofsky indexes. Intervention effects were less pronounced in patients with cognitive impairment or acute fractures. CONCLUSIONS: CBT is feasible and highly effective in geriatric patients. The benefits extend beyond effective recovery and include improvement in physical and functional parameters. Early diagnosis, good access to psychotherapy, and early intervention could improve care for depressive older patients. CLINICAL TRIAL REGISTRATION: www.germanctr.de German Trial Register DRKS 00004728."," J Am Med Dir Assoc 18(4): 341-349.","Germany",2017,"Psychiatric",null,"Unclear","Older Persons","RCT",null,"Germany","Older Persons","Psychiatric",null,"RCT",null,"Unclear","2015:2018"]
[71,"Iecovich, E. (2012). \"Psychometric properties of the Hebrew version of the Zarit Caregiver Burden Scale short version.\" Aging Ment Health 16(2): 254-263.",null,"Iecovich, E.","Psychometric properties of the Hebrew version of the Zarit Caregiver Burden Scale short version","OBJECTIVES: The purpose of this study was to evaluate the reliability and validity of the Hebrew version of the Zarit Burden Interview (H-ZBI) short version. METHOD: Cross-sectional research methodology was used to measure the caregiver burden felt by informal family caregivers of cognitively intact but physically frail older family members. Data of this study were drawn from two convenience samples that included altogether 456 dyads of family caregivers and care recipients in Israel. Caregivers included adult children, spouses, and other relatives of the care recipients. RESULTS: The H-ZBI short version demonstrated good psychometric properties similar to those of the English version. Internal consistency of Cronbach's alpha was high (alpha = 0.85) and the measure showed good convergent and exploratory validity due to significant correlations with Caregiving Burden Scale, caregivers' quality of life (World Health Organization Quality of Life, WHOQOL-Brief), perceived health and economic statuses, as well as with health and functional statuses of care recipients. Factor analysis showed two loading factors. CONCLUSIONS: The scale can be a useful screening instrument for professionals working with family caregivers to assess the degree of burden felt by family caregivers who provide long-term care for physically frail older adults. The scale also provides indications of the need for professional intervention when burden is great and negatively affects the caregivers' quality of life."," Aging Ment Health 16(2): 254-263.","Israel",2012,"Frailty",null,"Zarit,CBI","Older Persons","Validation",null,"Israel","Older Persons","Frailty",null,"Validation",null,"Zarit,CBI","2010:2014"]
[72,"Ivers, R. Q., et al. (2015). \"Understanding burn injuries in Aboriginal and Torres Strait Islander children: protocol for a prospective cohort study.\" BMJ Open 5(10): e009826.",null,"Ivers, R. Q., et al.","Understanding burn injuries in Aboriginal and Torres Strait Islander children: protocol for a prospective cohort study","INTRODUCTION: Although Aboriginal and Torres Strait Islander children in Australia have higher risk of burns compared with non-Aboriginal children, their access to burn care, particularly postdischarge care, is poorly understood, including the impact of care on functional outcomes. The objective of this study is to describe the burden of burns, access to care and functional outcomes in Aboriginal and Torres Strait Islander children in Australia, and develop appropriate models of care. METHODS AND ANALYSIS: All Aboriginal and Torres Strait Islander children aged under 16 years of age (and their families) presenting with a burn to a tertiary paediatric burn unit in 4 Australian States (New South Wales (NSW), Queensland, Northern Territory (NT), South Australia (SA)) will be invited to participate. Participants and carers will complete a baseline questionnaire; follow-ups will be completed at 3, 6, 12 and 24 months. Data collected will include sociodemographic information; out of pocket costs; functional outcome; and measures of pain, itch and scarring. Health-related quality of life will be measured using the PedsQL, and impact of injury using the family impact scale. Clinical data and treatment will also be recorded. Around 225 participants will be recruited allowing complete data on around 130 children. Qualitative data collected by in-depth interviews with families, healthcare providers and policymakers will explore the impact of burn injury and outcomes on family life, needs of patients and barriers to healthcare; interviews with families will be conducted by experienced Aboriginal research staff using Indigenous methodologies. Health systems mapping will describe the provision of care. ETHICS AND DISSEMINATION: The study has been approved by ethics committees in NSW, SA, NT and Queensland. Study results will be distributed to community members by study newsletters, meetings and via the website; to policymakers and clinicians via policy fora, presentations and publication in peer-reviewed journals."," BMJ Open 5(10): e009826.","Australia",2015,"Various",null,"PedsQL-FIM","Children and Adolescents","Protocol",null,"Australia","Children and Adolescents","Various",null,"Protocol",null,"PedsQL-FIM","2015:2018"]
[73,"Jenkinson, C., et al. (2000). \"The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe.\" J Neurol 247(11): 835-840.",null,"Jenkinson, C., et al.","The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe","The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assessment of health and the evaluation of treatment regimes. The past decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialties. However, the use of such measures in neurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motor neurone diseases in which patients are asked to complete questionnaires concerning their subjective health status. Data from clinical assessments are also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measures are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functional Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease. The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as an association between the emotional health status of patients and carers, and between the physical health status of patients and carers."," J Neurol 247(11): 835-840.","Europe",2000,"ALS",null,"CSI","Unspecified","Observational",null,"Europe","Unspecified","ALS",null,"Observational",null,"CSI","2000:2004"]
[74,"Jorge, B. M., et al. (2015). \"Cultural Adaptation Quality of Family Life Scale for the Brazilian Portuguese.\" Codas 27(6): 534-540.",null,"Jorge, B. M., et al.","Cultural Adaptation Quality of Family Life Scale for the Brazilian Portuguese","PURPOSE: To culturally adapt the Family Quality of Life Scale to the Brazilian Portuguese version and evaluate the instrument reliability and family quality of life of those who have children with hearing loss. METHODS: The process of cultural adaptation of the scale followed the steps of the Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measure. It was conducted in three stages: translation, back translation, and application in a pilot sample, as a way to check the comprehension difficulties of the items. After it had been completed, it was administered to 41 families who have children with hearing loss and, with their results, the quality of life and reliability were analyzed based on the Cronbach's alpha statistical test. RESULTS: In the first version (translation), among the 25 items, there were differences between the translators only in four items; after the corrections, the second version was done (back translation), in which other four more differences were found. Finally, after the final corrections, the last version was developed and used in the pilot sample without differences. Thus, it was applied to families with deaf children, who believe to be satisfied as to their quality of life. The Cronbach's alpha test found that the scale shows a satisfactory reliability. CONCLUSION: The Brazilian Portuguese version of the Family Quality of Life Scale is a tool of easy use and satisfactory reliability. The families are satisfied with their family quality of life."," Codas 27(6): 534-540.","Brazil",2015,"Sensory",null,"FQLS","Children and Adolescents","Validation",null,"Brazil","Children and Adolescents","Sensory",null,"Validation",null,"FQLS","2015:2018"]
[75,"Kelly, D. H., et al. (2012). \"Health-related quality of life and strain in caregivers of Australians with Parkinson's disease: an observational study.\" BMC Neurol 12: 57.",null,"Kelly, D. H., et al.","Health-related quality of life and strain in caregivers of Australians with Parkinson's disease: an observational study","BACKGROUND: The relationship between health-related quality of life (HRQoL) in people with Parkinson's disease and their caregivers is little understood and any effects on caregiver strain remain unclear. This paper examines these relationships in an Australian sample. METHODS: Using the generic EuroQol (EQ-5D) and disease-specific Parkinson's Disease Questionnaire-39 Item (PDQ-39), HRQoL was evaluated in a sample of 97 people with PD and their caregivers. Caregiver strain was assessed using the Modified Caregiver Strain Index. Associations were evaluated between: (i) caregiver and care-recipient HRQoL; (ii) caregiver HRQoL and caregiver strain, and; (iii) between caregiver strain and care-recipient HRQoL. RESULTS: No statistically significant relationships were found between caregiver and care-recipient HRQoL, or between caregiver HRQoL and caregiver strain. Although this Australian sample of caregivers experienced relatively good HRQoL and moderately low strain, a significant correlation was found between HRQoL of people with PD and caregiver strain (rho 0.43, p < .001). CONCLUSION: Poor HRQoL in people with PD is associated with higher strain in caregivers. Therapy interventions may target problems reported as most troublesome by people with PD, with potential to reduce strain on the caregiver."," BMC Neurol 12: 57.","Australia",2012,"Parkinson's",null,"CSI","Adults","Observational",null,"Australia","Adults","Parkinson's",null,"Observational",null,"CSI","2010:2014"]
[76,"Khan, M. S., et al. (2003). \"Background severity of asthma in children discharged from the emergency department.\" J Paediatr Child Health 39(6): 432-435.",null,"Khan, M. S., et al.","Background severity of asthma in children discharged from the emergency department","OBJECTIVE: Attendance at an Emergency Department (ED) with an acute attack of asthma may be indicative of undertreatment of persistent disease. However, many presentations are in children with infrequent episodic asthma. The aim of this study was to characterize the pattern of asthma of children discharged from ED to determine whether there was potential to improve underlying disease control. METHODOLOGY: This was a cohort study. Three hundred and ten parental caretakers of 1 to 15-year-old children, attended and discharged from an ED with asthma, completed an asthma control questionnaire, an asthma knowledge questionnaire and a caregiver's quality of life questionnaire. Background severity of asthma was classified and medication history was assessed. Also included were those with their first attack of asthma. RESULTS: One hundred and thirty-two (43%) children had infrequent episodic asthma, 105 (34%) frequent episodic, 40 (13%) persistent asthma and 33 (11%) first attack asthma. Thirty-nine per cent of children were not receiving preventer therapy and this seemed appropriate; 14% of children with frequent episodic and persistent asthma were not receiving appropriate preventer therapy; and a further 34% had frequent symptoms despite receiving preventer therapy. CONCLUSIONS: We observed deficiencies in use of preventer medications, use of written asthma management plans and lack of parental knowledge in some children with established asthma who presented to an ED. There was also a large number of children who did not have frequent background symptoms or who presented with their first episode."," J Paediatr Child Health 39(6): 432-435.","Australia",2003,"Respiratory",null,"Unclear","Children and Adolescents","Observational",null,"Australia","Children and Adolescents","Respiratory",null,"Observational",null,"Unclear","2000:2004"]
[77,"Koh, G. C., et al. (2015). \"Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial: protocol of a randomized clinical trial on tele-rehabilitation for stroke patients.\" BMC Neurol 15: 161.",null,"Koh, G. C., et al.","Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial: protocol of a randomized clinical trial on tele-rehabilitation for stroke patients","BACKGROUND: Most acute stroke patients with disabilities do not receive recommended rehabilitation following discharge to the community. Functional and social barriers are common reasons for non-adherence to post-discharge rehabilitation. Home rehabilitation is an alternative to centre-based rehabilitation but is costlier. Tele-rehabilitation is a possible solution, allowing for remote supervision of rehabilitation and eliminating access barriers. The objective of the Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) trial is to determine if a novel tele-rehabilitation intervention for the first three months after stroke admission improves functional recovery compared to usual care. METHODS/DESIGN: This is a single blind (evaluator blinded), parallel, two-arm randomised controlled trial study design involving 100 recent stroke patients. The inclusion criteria are age >/=40 years, having caregiver support and recent stroke defined as stroke diagnosis within 4 weeks. Consenting participants will be randomized with varying block size of 4 or 6 assuming a 1:1 treatment allocation with the participating centre as the stratification factor. The baseline assessment will be done within 4 weeks of stroke onset, followed by follow-up assessments at 3 and 6 months. The tele-rehabilitation intervention lasts for 3 months and includes exercise 5-days-a-week using an iPad-based system that allows recording of daily exercise with video and sensor data and weekly video-conferencing with tele-therapists after data review. Those allocated to the control group will receive usual care. The primary outcome measure is improvement in life task's social activity participation at three months as measured by the disability component of the Jette Late Life Functional and Disability Instrument (LLFDI). Secondary outcome variables consist of gait speed (Timed 5-Meter Walk Test) and endurance (Two-Minute Walk test), performance of basic activities of daily living (Shah-modified Barthel Index), balance confidence (Activities-Specific Balance Confidence Scale), patient self-reported health-related quality-of-life [Euro-QOL (EQ-5D)], health service utilization (Singapore Stroke Study Health Service Utilization Form) and caregiver reported stress (Zarit Caregiver Burden Inventory). DISCUSSION: The goal of this trial is to provide evidence on the potential benefit and cost-effectiveness of this novel tele-rehabilitation programme which will guide health care decision-making and potentially improve performance of post-stroke community-based rehabilitation. TRIAL REGISTRATION: This trial protocol was registered under ClinicalTrials.gov on 18 July 2013 as study title \"The Singapore Tele-technology Aided Rehabilitation in Stroke (STARS) Study\" (ID: The STARS Study, ClinicalTrials.gov Identifier: NCT01905917 )."," BMC Neurol 15: 161.","Singapore",2015,"Stroke",null,"Zarit","Adults","Protocol",null,"Singapore","Adults","Stroke",null,"Protocol",null,"Zarit","2015:2018"]
[78,"Kolakowsky-Hayner, S. A., et al. (2001). \"Long-term life quality and family needs after traumatic brain injury.\" J Head Trauma Rehabil 16(4): 374-385.",null,"Kolakowsky-Hayner, S. A., et al.","Long-term life quality and family needs after traumatic brain injury","OBJECTIVES: This investigation assessed the life quality and long-term family needs of caregivers of persons with brain injury. DESIGN: Respondents completed the Virginia Traumatic Brain Injury Family Needs Assessment Survey. SETTING: Community-based sample. PARTICIPANTS: Respondents included 57 caregivers of persons with traumatic brain injury who were at least 4 years after injury and who resided in Virginia. Respondents ranged in age from 19 to 82 years and were primarily women and Caucasian. OUTCOME MEASURES: The Family Needs Questionnaire (FNQ) and quality of life questions. RESULTS: Results indicate diminished life quality after injury. With regard to family needs, Health Information (51.43%) and Involvement with Care (47.93%) needs were most often rated as met. Instrumental Support (31.52%) and Professional Support (28.38%) needs were most often rated as not met. CONCLUSIONS: Family needs and support systems for those needs change over time. This investigation provides evidence that unmet family needs extend well beyond the acute setting and that caregiver life quality diminishes over time. The importance of appreciating long-term family needs and other life quality issues should not be underestimated."," J Head Trauma Rehabil 16(4): 374-385.","USA",2001,"Neurology",null,"FNQ","Unspecified","Observational",null,"USA","Unspecified","Neurology",null,"Observational",null,"FNQ","2000:2004"]
[79,"Kreutzer, J. S., et al. (2009). \"Caregivers' concerns about judgment and safety of patients with brain injury: a preliminary investigation.\" Pm r 1(8): 723-728.",null,"Kreutzer, J. S., et al.","Caregivers' concerns about judgment and safety of patients with brain injury: a preliminary investigation","OBJECTIVE: To identify caregivers' most common concerns about the judgment and safety of patients with brain injury in home and community environments. To quantify caregivers' stress levels and their level of comfort leaving patients at home unsupervised and examine the interrelationships between caregivers' safety and judgment ratings, stress levels, and levels of comfort leaving patients unattended. DESIGN: Retrospective, cross-sectional design. SETTING: Outpatient brain injury neuropsychology clinic at a university medical center. PARTICIPANTS: A convenience sample of 121 caregivers of traumatic brain injury survivors at least 1 month postinjury and 18 years of age or older. MAIN OUTCOME MEASUREMENTS: Scores in 9 domains from the Judgment and Safety Screening Inventory; ratings of stress levels and levels of comfort leaving patients at home unattended derived from the General Health and History Questionnaire. RESULTS: Caregivers' most common judgment and safety-related concerns were in the Travel and Financial domains, with many reflecting patients' memory deficits. Heightened caregiver stress levels were prevalent. Higher levels of concern about judgment and safety were associated with higher stress levels and concerns about leaving patients unattended. CONCLUSIONS: Consistent with research on patients with other types of neurological disorders, concerns about driving and financial management among caregivers are prevalent. Additional research is needed to identify the most cost-effective methods of evaluating patients and enabling them to function at their highest level in the community."," Pm r 1(8): 723-728.","USA",2009,"Neurology",null,"GHHQ","Adults","Observational",null,"USA","Adults","Neurology",null,"Observational",null,"GHHQ","2005:2009"]
[80,"Landfeldt, E., et al. (2016). \"Quantifying the burden of caregiving in Duchenne muscular dystrophy.\" J Neurol 263(5): 906-915.",null,"Landfeldt, E., et al.","Quantifying the burden of caregiving in Duchenne muscular dystrophy","Duchenne muscular dystrophy (DMD) is a rare pediatric neuromuscular disease associated with progressive muscle degeneration and extensive care needs. Our objective was to estimate the caregiver burden associated with DMD. We made cross-sectional assessments of caregiver health-related quality of life (HRQL) and burden using the EuroQol EQ-5D, a Visual Analogue Scale (VAS), the SF-12 Health Survey, and the Zarit Caregiver Burden Interview (ZBI) administered online. Results were stratified by disease stage (early/late ambulatory/non-ambulatory) and caregivers' rating of patients' health and mental status. In total, caregivers to 770 patients participated. Mean EQ-5D utility ranged between 0.85 (95 % CI 0.82-0.88) and 0.77 (0.74-0.80) across ambulatory classes and 0.88 (0.85-0.90) and 0.57 (0.39-0.74) across caregivers' rating of patients' health and mental status. Mean VAS score was 0.74 (0.73-0.75), mean SF-12 Mental Health Component Summary score 44 (43-45), and mean ZBI score 29 (28-30). Anxiety and depression, recorded in up to 70 % of caregivers depending on patients' health and mental status, was significantly associated with annual household cost burden (>$5000 vs. <$1000, odds ratio 1.76, 95 % CI 1.18-2.63) and hours of leisure time devoted to informal care per week (25-50 vs. <25 h 2.01, 1.37-2.94; >50 vs. <25 h 3.35, 2.32-4.83) (p < 0.007). We show that caring for a person with DMD can be associated with a substantial burden and impaired HRQL. Our findings suggest that caregivers to patients with DMD should be screened for depression and emphasize the need for a holistic approach to family mental health in the context of chronic childhood disease."," J Neurol 263(5): 906-915.","Sweden,UK",2016,"Neurology",null,"Zarit","Children and Adolescents","Observational",null,"Sweden,UK","Children and Adolescents","Neurology",null,"Observational",null,"Zarit","2015:2018"]
[81,"Lang, P. O., et al. (2010). \"Early markers of prolonged hospital stay in demented inpatients: a multicentre and prospective study.\" J Nutr Health Aging 14(2): 141-147.",null,"Lang, P. O., et al.","Early markers of prolonged hospital stay in demented inpatients: a multicentre and prospective study","BACKGROUND: Dementia is a serious, chronic, and costly public health problem. Prior studies have described dementia as increasing length of hospital stay, but so far no explanations have been proposed. METHODS: To identify early markers for prolonged hospital stay in demented elderly inpatients, 178 community-dwelling or institutionalized subjects aged 75+, hospitalized through an emergency department in 9 teaching hospitals in France, were analyzed. Prolonged hospital stays were defined according a limit adjusted for Diagnosis Related Group. All patients underwent a comprehensive geriatric assessment at admission. Logistic regression multifactorial mixed model was performed. Center effect was considered as a random effect. RESULTS: Of the 178 stays, 52 were prolonged. Most concerned community-dwelling patients (86%). Multifactor analysis demonstrated that demographic variables had no influence on the length of stay, while diagnosis of delirium (OR 2.31; 95% CI 1.77 - 2.91), walking difficulties (OR 1.94; 95% CI 1.62 - 2.43) and report by the informal caregiver of moderate or severe burden (OR 1.52; 95% CI 1.19 - 1.86) or low social quality-of-life score (OR 1.25; 95% CI 1.03 - 1.40), according to the Zarit's Burden Inventory short scale (12 items) and the Duke's Health Profile respectively, were identified as early markers for prolonged hospital stays. CONCLUSION: At the time of the rising incidence of cognitive disorders, these results suggest that preventive approaches might be possible. In a hospital setting as well as in a community-dwelling population, more specific, specialized and coordinated care, using the expertise of multiple disciplines appears as a probable effective measure to limit prolonged hospital stay. Such approaches require (i) clear patient-oriented goal definition, (ii) understanding and appreciation of roles among various health care and social disciplines and, (iii) cooperation between partners in patient's management. However, the cost- and health-effectiveness of such approaches should be evaluated."," J Nutr Health Aging 14(2): 141-147.","Switzerland",2010,"Dementia",null,"Zarit","Older Persons","Observational",null,"Switzerland","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[82,"Lebrec, J., et al. (2016). \"Effect of diabetes on caregiver burden in an observational study of individuals with Alzheimer's disease.\" BMC Geriatr 16: 93.",null,"Lebrec, J., et al.","Effect of diabetes on caregiver burden in an observational study of individuals with Alzheimer's disease","BACKGROUND: The burden on caregivers of patients with Alzheimer's disease (AD) is associated with the patient's functional status and may also be influenced by chronic comorbid medical conditions, such as diabetes. This post-hoc exploratory analysis assessed whether comorbid diabetes in patients with AD affects caregiver burden, and whether caregivers with diabetes experience greater burden than caregivers without diabetes. Caregiver and patient healthcare resource use (HCRU) were also assessed. METHODS: Baseline data from the GERAS observational study of patients with AD and their caregivers (both n = 1495) in France, Germany and the UK were analyzed. Caregiver burden was assessed using the Zarit Burden Interview (ZBI). Caregiver time on activities of daily living (ADL: basic ADL; instrumental ADL, iADL) and supervision (hours/month), and caregiver and patient HCRU (outpatient visits, emergency room visits, nights hospitalized) were assessed using the Resource Utilization in Dementia instrument for the month before the baseline visit. Regression analyses were adjusted for relevant covariates. Time on supervision and basic ADL was analyzed using zero-inflated negative binomial regression. RESULTS: Caregivers of patients with diabetes (n = 188) were younger and more likely to be female (both p < 0.05), compared with caregivers of patients without diabetes (n = 1307). Analyses showed caregivers of patients with diabetes spent significantly more time on iADL (+16 %; p = 0.03; increases were also observed for basic ADL and total caregiver time but did not reach statistical significance) and had a trend towards increased ZBI score. Patients with diabetes had a 63 % increase in the odds of requiring supervision versus those without diabetes (p = 0.01). Caregiver and patient HCRU did not differ according to patient diabetes. Caregivers with diabetes (n = 127) did not differ from those without diabetes (n = 1367) regarding burden/time, but caregivers with diabetes had a 91 % increase in the odds of having outpatient visits (p = 0.01). CONCLUSIONS: This cross-sectional analysis found caregiver time on iADL and supervision was higher for caregivers of patients with AD and diabetes versus without diabetes, while HCRU was unaffected by patient diabetes. Longitudinal analyses assessing change in caregiver burden over time by patient diabetes status may help clarify the cumulative impact of diabetes and AD dementia on caregiver burden."," BMC Geriatr 16: 93.","Germany,USA",2016,"Dementia,Diabetes",null,"Zarit","Older Persons","Observational",null,"Germany,USA","Older Persons","Dementia,Diabetes",null,"Observational",null,"Zarit","2015:2018"]
[83,"Leidy, N. K. and A. Knebel (2010). \"In search of parsimony: reliability and validity of the Functional Performance Inventory-Short Form.\" Int J Chron Obstruct Pulmon Dis 5: 415-423.",null,"Leidy, N. K. and A. Knebel","In search of parsimony: reliability and validity of the Functional Performance Inventory-Short Form","PURPOSE: the 65-item Functional Performance Inventory (FPI), developed to quantify functional performance in patients with chronic obstructive pulmonary disease (COPD), has been shown to be reliable and valid. The purpose of this study was to create a shorter version of the FPI while preserving the integrity and psychometric properties of the original. PATIENTS AND METHODS: secondary analyses were performed on qualitative and quantitative data used to develop and validate the FPI long form. Seventeen men and women with COPD participated in the qualitative work, while 154 took part in the mail survey; 54 completed 2-week reproducibility assessment, and 40 relatives contributed validation data. Following a systematic process of item reduction, performance properties of the 32-item short form (FPI-SF) were examined. RESULTS: the FPI-SF was internally consistent (total scale alpha = 0.93; subscales: 0.76-0.89) and reproducible (r = 0.88; subscales: 0.69-0.86). Validity was maintained, with significant (P < 0.001) correlations between the FPI-SF and the Functional Status Questionnaire (activities of daily living, r = 0.71; instrumental activities of daily living, r = 0.73), Duke Activity Status Index (r = 0.65), Bronchitis-Emphysema Symptom Checklist (r = -0.61), Basic Need Satisfaction Inventory (r = 0.61) and Cantril's Ladder of Life Satisfaction (r = 0.63), and Katz Adjustment Scale for Relatives (socially expected activities, r = 0.51; free-time activities, r = -0.49, P < 0.01). The FPI-SF differentiated patients with an FEV(l)% predicted greater than and less than 50% (t = 4.26, P < 0.001), and those with severe and moderate levels of perceived severity and activity limitation (t = 9.91, P < 0.001). CONCLUSION: results suggest the FPI-SF is a viable alternative to the FPI for situations in which a shorter instrument is desired. Further assessment of the instrument's performance properties in new samples of patients with COPD is warranted."," Int J Chron Obstruct Pulmon Dis 5: 415-423.","USA",2010,"Respiratory",null,"Katz","Unspecified","Validation",null,"USA","Unspecified","Respiratory",null,"Validation",null,"Katz","2010:2014"]
[84,"Leroi, I., et al. (2014). \"Memantine improves goal attainment and reduces caregiver burden in Parkinson's disease with dementia.\" Int J Geriatr Psychiatry 29(9): 899-905.",null,"Leroi, I., et al.","Memantine improves goal attainment and reduces caregiver burden in Parkinson's disease with dementia","OBJECTIVE: Memantine, an uncompetitive antagonist of N-methyl-d-aspartate receptors, may have a role in managing symptoms associated with dementia in Parkinson's disease (PDD), although its role in improving patient-reported outcomes (PROs) has not been extensively investigated. PROs may be more sensitive than standard psychometric measures for detecting change in complex conditions such as PDD. The aim of this study was to examine the effect of memantine on PROs: individually determined goals and health-related quality of life. We also examined memantine's effect on caregiver burden. METHODS: This 22-week double-blind randomised controlled trial evaluated participants with PDD on 20 mg of memantine or placebo. Outcome measures were Goal Attainment Scaling (GAS), the Parkinson's Disease Questionnaire-8 and the Zarit Burden Inventory. RESULTS: A significantly greater proportion of participants on memantine (64%) had better than expected GAS outcomes compared with those on placebo (7%) (p = 0.007). Furthermore, the improvement in mean GAS score, as well as mean caregiver burden score, from baseline to drug discontinuation was significantly greater in those on memantine compared with those on placebo (p = 0.03 and 0.04, respectively). Significant differences in quality of life were not seen. CONCLUSIONS: In this study, memantine improved individually set goals and caregiver burden in PDD. This suggests that clinimetric measures such as GAS may be more sensitive than conventional psychometric measures in detecting improvements in people with PDD."," Int J Geriatr Psychiatry 29(9): 899-905.","UK",2014,"Parkinson's,Dementia",null,"Zarit","Older Persons","RCT",null,"UK","Older Persons","Parkinson's,Dementia",null,"RCT",null,"Zarit","2010:2014"]
[85,"Lilja, G., et al. (2013). \"Cognitive function after cardiac arrest and temperature management; rationale and description of a sub-study in the Target Temperature Management trial.\" BMC Cardiovasc Disord 13: 85.",null,"Lilja, G., et al.","Cognitive function after cardiac arrest and temperature management; rationale and description of a sub-study in the Target Temperature Management trial","BACKGROUND: Mild to moderate cognitive impairment is common amongst long-term survivors of cardiac arrest. In the Target Temperature Management trial (TTM-trial) comatose survivors were randomized to 33 degrees C or 36 degrees C temperature control for 24 hours after cardiac arrest and the effects on survival and neurological outcome assessed. This protocol describes a sub-study of the TTM-trial investigating cognitive dysfunction and its consequences for patients' and relatives' daily life. METHODS/DESIGN: Sub-study sites in five European countries included surviving TTM patients 180 days after cardiac arrest. In addition to the instruments for neurological function used in the main trial, sub-study patients were specifically tested for difficulties with memory (Rivermead Behavioural Memory Test), attention (Symbol Digit Modalities Test) and executive function (Frontal Assessment Battery). Cognitive impairments will be related to the patients' degree of participation in society (Mayo-Portland Adaptability Inventory-4), health related quality of life (Short Form Questionnaire-36v2(c)), and the caregivers' situation (Zarit Burden Interview(c)). The two intervention groups (33 degrees C and 36 degrees C) will be compared with a group of myocardial infarction controls. DISCUSSION: This large international sub-study of a randomized controlled trial will focus on mild to moderate cognitive impairment and its consequences for cardiac arrest survivors and their caregivers. By using an additional battery of tests we may be able to detect more subtle differences in cognitive function between the two intervention groups than identified in the main study. The results of the study could be used to develop a relevant screening model for cognitive dysfunction after cardiac arrest. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01946932."," BMC Cardiovasc Disord 13: 85.","Europe",2013,"Cardiac",null,"Zarit","Adults","Protocol",null,"Europe","Adults","Cardiac",null,"Protocol",null,"Zarit","2010:2014"]
[86,"Lin, L. N. and S. C. Wu (2014). \"Measurement structure of the caregiver burden scale: findings from a national community survey in Taiwan.\" Geriatr Gerontol Int 14(1): 176-184.",null,"Lin, L. N. and S. C. Wu","Measurement structure of the caregiver burden scale: findings from a national community survey in Taiwan","AIM: There is no appropriate understanding of community family caregiver burden. The object of the present study was to evaluate the measurement structure of a caregiver burden scale from a nationally representative Taiwanese community sample. METHODS: Data from nationally representative subjects completing face-to-face interviews on caregiver burden were analyzed. A total of 9020 primary adult family caregivers were enrolled. All of the valid respondents were equally divided into three subsamples. The first sample was used to explore the factor structure of burden scale. The second sample was used to validate the factor structure. The third sample was used to verify the adequacy and stability of the factor structures developed in the former steps. RESULTS: A total of 8826 valid data were included for analysis. Exploratory and confirmatory factor analysis identified the four-factor, 15-item Caregiver Burden Scale (CBS-15) in the present study. The extracted four factors were predominantly accounted for by the items measuring \"burden of time,\" \"relational burden,\" \"financial burden\" and \"emotional burden\". All the goodness-of-fit indices reported for this model were acceptable. CONCLUSION: The present study supports the usefulness of the CBS-15 as a tool to understand the measurement structure of burden in a nationally representative Taiwanese community family caregivers sample. The CBS-15 can be used to identify community caregiver needs."," Geriatr Gerontol Int 14(1): 176-184.","Taiwan",2014,"Unspecified",null,"CBS","Adults","Validation",null,"Taiwan","Adults","Unspecified",null,"Validation",null,"CBS","2010:2014"]
[87,"Lin, L. P., et al. (2015). \"Comparison of job burnout and life satisfaction between native and foreign female direct care workers in disability institutions.\" Work 52(4): 803-809.",null,"Lin, L. P., et al.","Comparison of job burnout and life satisfaction between native and foreign female direct care workers in disability institutions","BACKGROUND: There is little information about the burnout and wellbeing of institutional caregivers working for people with intellectual and developmental disabilities; information is particularly limited in the understanding of experiences of direct care workers. OBJECTIVE: The aims of the study were to provide a profile of self-perceived burnout and wellbeing of direct-care caregivers working in disability institutions, and to compare the difference between native- and foreign caregivers. METHODS: A cross-sectional survey was conducted. We recruited 46 female living assistants of people with intellectual and developmental disabilities in two disability institutions in Taiwan. There were 23 subjects who were local residents and 23 subjects who were foreign providers of labor. A self-administered questionnaire which included scale of the Copenhagen Burnout Inventory (CBI), the Subjective Happiness Scale (SHS), and the Satisfaction with Life Scale (SWLS) were employed in the survey. RESULTS: Findings revealed the local caregivers were slightly higher than foreign caregivers in personal burnout score (PBS) and work-related burnout score (WBS), although there were no significant differences. Those caregivers from foreign countries seem to be slightly happier and have higher life satisfaction than native caregivers. CONCLUSIONS: In order to decrease the burnout and improve wellbeing of caregivers of people with intellectual and developmental disabilities, service providers should understand the experiences which caregivers encounter in their workplaces. Caregivers can benefit if they receive appropriate support to improve positive health while working for their service clients."," Work 52(4): 803-809.","Taiwan",2015,"Developmental",null,"CopBI","Children and Adolescents","Observational",null,"Taiwan","Children and Adolescents","Developmental",null,"Observational",null,"CopBI","2015:2018"]
[88,"Lincoln, N. B., et al. (2003). \"Evaluation of a stroke family support organiser: a randomized controlled trial.\" Stroke 34(1): 116-121.",null,"Lincoln, N. B., et al.","Evaluation of a stroke family support organiser: a randomized controlled trial","BACKGROUND AND PURPOSE: There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service. METHODS: Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services. RESULTS: There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information. CONCLUSIONS: The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers."," Stroke 34(1): 116-121.","UK",2003,"Stroke",null,"CSI","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[89,"Lincoln, N. B., et al. (2004). \"Evaluation of a multiprofessional community stroke team: a randomized controlled trial.\" Clin Rehabil 18(1): 40-47.",null,"Lincoln, N. B., et al.","Evaluation of a multiprofessional community stroke team: a randomized controlled trial","OBJECTIVES: There is inconclusive evidence of the effectiveness of stroke rehabilitation by a community stroke team. The aim was to evaluate a specialist multiprofessional team in a community setting. DESIGN: Randomized controlled trial. SETTING: Community. PARTICIPANTS: Stroke patients and their informal carers who were referred to receive rehabilitation from a community stroke team. OUTCOME MEASURES: Barthel Index, Extended Activities of Daily Living Scale (EADL), General Health Questionnaire (GHQ-12) by patient and carer, Carer Strain Index (CSI), Euroquol, knowledge of stroke and satisfaction with services six months after recruitment. RESULTS: There were no significant differences between patients who received rehabilitation from community stroke team (n = 189) and those who received routine care (n = 232) in their independence in activities of daily living, mood, quality of life or knowledge of stroke. The patients in the community stroke team group were significantly more satisfied with the emotional support they had received (p < 0.01). There were no significant differences between the groups in satisfaction with practical help or overall satisfaction. Carers of patients in the community stroke team were under significantly less strain than carers in the routine care group (p < 0.04). Carers of patients in the community stroke team group were significantly more satisfied with their knowledge of stroke (p < 0.01) and were more satisfied overall (p < 0.01). CONCLUSIONS: The patients treated by the community stroke team were more satisfied with the emotional support they received and had equivalent outcomes in terms of independence in activities of daily living and mood. Their carers were under less strain and were more satisfied with their knowledge of stroke recovery, the emotional support they received and overall satisfaction with services. The results support the provision of rehabilitation by a community-based specialist multiprofessional team."," Clin Rehabil 18(1): 40-47.","UK",2004,"Stroke",null,"CSI","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[90,"Lincoln, N. B., et al. (2015). \"Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis: study protocol for a randomised controlled trial (CRAMMS).\" Trials 16: 556.",null,"Lincoln, N. B., et al.","Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis: study protocol for a randomised controlled trial (CRAMMS)","BACKGROUND: People with multiple sclerosis have problems with memory and attention. Cognitive rehabilitation is a structured set of therapeutic activities designed to retrain an individual's memory and other cognitive functions. Cognitive rehabilitation may be provided to teach people strategies to cope with these problems, in order to reduce the impact on everyday life. The effectiveness of cognitive rehabilitation for people with multiple sclerosis has not been established. METHODS: This is a multi-centre, randomised controlled trial investigating the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems for people with multiple sclerosis. Four hundred people with multiple sclerosis will be randomised from at least four centres. Participants will be eligible if they have memory problems, are 18 to 69 years of age, are able to travel to attend group sessions and give informed consent. Participants will be randomised in a ratio of 6:5 to the group rehabilitation intervention plus usual care or usual care alone. Intervention groups will receive 10 weekly sessions of a manualised cognitive rehabilitation programme. The intervention will include both restitution strategies to retrain impaired attention and memory functions and compensation strategies to enable participants to cope with their cognitive problems. All participants will receive a follow-up questionnaire and an assessment by a research assistant at 6 and 12 months after randomisation. The primary outcome is the Multiple Sclerosis Impact Scale (MSIS) Psychological subscale at 12 months. Secondary outcomes include the Everyday Memory Questionnaire, General Health Questionnaire-30, EQ-5D and a service use questionnaire from participants, and the Everyday Memory Questionnaire-relative version and Carer Strain Index from a relative or friend. The primary analysis will be based on intention to treat. A mixed-model regression analysis of the MSIS Psychological subscale at 12 months will be used to estimate the effect of the group cognitive rehabilitation programme. DISCUSSION: The study will provide evidence regarding the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems in people with multiple sclerosis. TRIAL REGISTRATION: ISRCTN09697576 . Registered 14 August 2014."," Trials 16: 556.","UK",2015,"Multiple Sclerosis",null,"CSI","Adults","RCT",null,"UK","Adults","Multiple Sclerosis",null,"RCT",null,"CSI","2015:2018"]
[91,"Lindvall, K., et al. (2014). \"Increased burden on caregivers of having a child with haemophilia complicated by inhibitors.\" Pediatr Blood Cancer 61(4): 706-711.",null,"Lindvall, K., et al.","Increased burden on caregivers of having a child with haemophilia complicated by inhibitors","INTRODUCTION: Having a child with a chronic disease often increases the burden in the family with more hospital visits, treatment administration, and increased worries for the ill child. A cross-sectional, international, multi-centre study in caregivers of children <18 years with haemophilia and inhibitor was performed at Haemophilia Treatment Centres in Sweden, UK, and Canada to evaluate caregivers' burden and their health-related quality of life (HRQoL) compared to that of caregivers of children on prophylaxis without inhibitors and caregivers of healthy children. METHODS: Caregivers of children with haemophilia completed several questionnaires (SF-36, Visual Analogue Scale of Interference (VAS), Caregivers' Burden Scale and Impact on Family Scale (IOF). Caregivers of healthy children completed only the SF-36. In addition, socio-demographic data were collected. RESULTS: In total, 143 caregivers were included in the study. Comparing the two haemophilia groups with caregivers of healthy children revealed significant differences for all SF-34 domains except 'pain' and 'general health'. In Caregivers' Burden Scale, caregivers of children with inhibitors reported higher impact of haemophilia (P < 0.0001) and higher impact on VAS (P < 0.0001) compared to caregivers of children without inhibitors. In IOF, caregivers of children with inhibitors reported significant negative impact of the disease, except for aspect of coping. CONCLUSION: Caregivers of children with inhibitors reported higher impact of the disease compared to caregivers of children with no inhibitors. No differences between mothers and fathers in the two groups for SF-36, Caregivers' Burden Scale, VAS and IOF, except for domain pain in SF-36 where mothers reported higher impairments."," Pediatr Blood Cancer 61(4): 706-711.","Sweden,UK,Canada",2014,"Genetic",null,"CBS,FIS","Children and Adolescents","Observational",null,"Sweden,UK,Canada","Children and Adolescents","Genetic",null,"Observational",null,"CBS,FIS","2010:2014"]
[92,"Liu, J. F., et al. (2017). \"Burden on caregivers of ventilator-dependent patients: A cross-sectional study.\" Medicine (Baltimore) 96(27): e7396.",null,"Liu, J. F., et al.","Burden on caregivers of ventilator-dependent patients: A cross-sectional study","Caring for prolonged mechanical ventilation (PMV) patients imposes heavy psychological, physical, social, and financial burdens on caregivers. Currently, studies regarding the burden on caregivers of PMV patients are scant; therefore, the present study investigated the burden on caregivers of PMV patients.This cross-sectional study was approved by the Institutional Review Board of Zuoying Armed Forces General Hospital. A survey was conducted among the caregivers of PMV patients who were admitted to a chronic respiratory care ward (RCW) or were receiving home care from June to December 2010. The survey included basic demographic information of PMV patients and their caregivers and the Burden Assessment Scale scores for 4 domains comprising a total of 21 questions (physical burden, n = 5; psychological burden, n = 6; social burden, n = 6; financial burden, n = 4). Statistical analyses were conducted using the t test, 1-way analysis of variance with the Scheffe post hoc test, and the chi-square test, and P < .05 was considered statistically significant.A total of 160 caregivers (age, 50-53 years) were recruited (n = 80 each in the home care and RCW groups), and most of these caregivers were married women. Due to insufficient sleep, physical exhaustion, back pain, and caregiving, home caregivers had significantly higher physical burden levels than RCW caregivers (P < .01).Home caregivers experienced higher physical burden levels than RCW caregivers. Therefore, clinical and professional support must be provided to home caregivers of PMV patients."," Medicine (Baltimore) 96(27): e7396.","Taiwan",2017,"Respiratory",null,"BAS","Unspecified","Observational",null,"Taiwan","Unspecified","Respiratory",null,"Observational",null,"BAS","2015:2018"]
[93,"Locker, D., et al. (2002). \"Family impact of child oral and oro-facial conditions.\" Community Dent Oral Epidemiol 30(6): 438-448.",null,"Locker, D., et al.","Family impact of child oral and oro-facial conditions","OBJECTIVES: The aim of this study was to develop and evaluate the Family Impact Scale, a measure of the family impact of child oral and oro-facial disorders. This formed one component of the Child Oral Health Quality of Life Instrument. METHODS: The scale was developed using a process described by Guyatt et al. (1987) and Juniper et al. (1996). An item pool was developed using a review of existing child health status and family impact questionnaires, interviews with 41 parents-caregivers of children with paedodontic, orthodontic and oro-facial conditions and discussions with dental specialists. The resulting pool of 21 items was used in an item impact study in which 93 parents-caregivers provided data on the frequency and importance of these items. The 14 items identified most frequently or rated the most important were selected for the final questionnaire. The discriminant and construct validity and internal consistency reliability of this 14-item scale were assessed in a study of 266 parents-caregivers from the three clinical groups. Seventy-nine of these participants completed a second copy of the questionnaire to facilitate assessment of test-retest reliability. RESULTS: Family Impact Scale scores ranged from 0 to 33, indicating that the measure was sensitive to variations in family impact. Floor effects were minimal with only 10.2% of subjects having a score of zero and there were no ceiling effects, that is, subjects with maximum scores. Almost three-quarters of parents-caregivers reported some family impact 'sometimes' or 'often/everyday' over the previous 3 months. Impact on parental or family activities of this frequency was reported by 53.0%, impact on parental emotions by 44.0%, conflict in the family by 31.6% and financial difficulties by 31.2%. The measure and its component items were reasonably good at discriminating between the three clinical groups included in the study and showed good construct validity. It had excellent internal consistency reliability with a Cronbach's alpha of 0.83 and was reproducible for parent-caregivers who reported that their child's condition was stable (ICC = 0.80). CONCLUSIONS: The study provides some data to suggest that child oral and oro-facial conditions have a pervasive impact on the family. The Family Impact Scale had good technical properties. Its evaluative properties need to be tested in longitudinal studies."," Community Dent Oral Epidemiol 30(6): 438-448.","Canada",2002,"Oral Health",null,"FIS","Children and Adolescents","Observational",null,"Canada","Children and Adolescents","Oral Health",null,"Observational",null,"FIS","2000:2004"]
[94,"Loebig, M. (1990). \"Mothers' assessments of the impact of children with spina bifida on the family.\" Matern Child Nurs J 19(3): 251-264.",null,"Loebig, M.","Mothers' assessments of the impact of children with spina bifida on the family","This exploratory, descriptive study examined mothers' assessments of the impact of children with spina bifida on the family. A review of the literature indicated that families can be conceptualized as systems and that the impact of a child with spina bifida is experienced throughout the system. The subjects were a convenience sample of ten mothers of children ages 5 to 11 with spina bifida. Three instruments were used to collect data. The Child Health History and Demographic Questionnaire; the Impact on Family Scale (Stein & Riessman, 1980); and the Parent Concern Questionnaire. The instruments were administered to subjects in fixed order. Demographic and family impact data were collected in writing. Parent concern data were collected through audiotaped interviews. Demographic data were summarized for frequencies. Impact on Family scores were tabulated and compared to the score of a reference group using a two-tailed student's t-test and a p value of p less than or equal to .05. Wilcoxon rank-sum tests were run on the Impact on Family scores to examine for differences by income, presence of siblings, child's educational setting, and marital status. Parent concern data were content analyzed for themes. Mean scores of Impact on Family dimensions were not significantly different from a reference sample of mothers of children with chronic conditions. Within the sample, positive relationships were found between financial impact and the presence of siblings, impact on social relations and both single parenthood and having a child in special education, and coping and higher incomes. Mothers' concerns included their children's social development, rehabilitation, and independence issues. Impact issues included sibling protectiveness, conflicts with grandparents over the child with spina bifida, and financial costs. Most mothers reported optimism about their child with spina bifida."," Matern Child Nurs J 19(3): 251-264.","Unknown",1990,"Neurology",null,"FIS","Children and Adolescents","Observational",null,"Unknown","Children and Adolescents","Neurology",null,"Observational",null,"FIS","1990:1994"]
[95,"Logiudice, D., et al. (1999). \"Do memory clinics improve the quality of life of carers? A randomized pilot trial.\" Int J Geriatr Psychiatry 14(8): 626-632.",null,"Logiudice, D., et al.","Do memory clinics improve the quality of life of carers? A randomized pilot trial","OBJECTIVE: To determine the effects of attendance at a memory clinic on the psychosocial health of carers. DESIGN: Randomized control trial. PARTICIPANTS: Fifty community dwelling subjects with mild to moderate dementia and their carers. MAIN OUTCOME MEASURES: Carer burden, psychological morbidity and psychosocial health related quality of life at 6 and 12 months post intervention. MAIN RESULTS: There was significant improvement in psychosocial health related quality of life of carers as measured by the psychosocial domain of the Functional Limitation Profile (FLP) at 6 months (p < 0.01), including improvement in the subgroups of alertness behaviour (p < 0.05) and social interaction (p < 0.01), after adjustment for age of subject and baseline scores. The improvement in social interaction was maintained at 12 months (p < 0.05). There was no significant difference in carer psychological morbidity (General Health Questionnaire), carer burden (Zarit family interview) or carer knowledge of dementia (Dementia Knowledge Test) at 6 or 12 months, between groups. CONCLUSIONS: These results demonstrate improved psychosocial health related quality of life for carers of those with mild to moderate cognitive impairment attending a memory clinic. Further research in this area is indicated, comparing memory clinic intervention with alternative support."," Int J Geriatr Psychiatry 14(8): 626-632.","Australia",1999,"Dementia",null,"Zarit","Older Persons","Observational",null,"Australia","Older Persons","Dementia",null,"Observational",null,"Zarit","1995:1999"]
[96,"Lutomski, J. E., et al. (2015). \"Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS).\" Qual Life Res 24(5): 1281-1293.",null,"Lutomski, J. E., et al.","Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)","PURPOSE: Validity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire). METHODS: Data were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu ), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol's seven dimensions (CarerQol-7D) and caregiver's level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed. RESULTS: The CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels. CONCLUSIONS: Although good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted."," Qual Life Res 24(5): 1281-1293.","Netherlands",2015,"Frailty",null,"CarerQol","Older Persons","Validation",null,"Netherlands","Older Persons","Frailty",null,"Validation",null,"CarerQol","2015:2018"]
[97,"Lyu, Q. Y., et al. (2015). \"Validation of Hospitalization Impact Scale among families with children hospitalized for cancer treatment.\" J Adv Nurs 71(8): 1958-1969.",null,"Lyu, Q. Y., et al.","Validation of Hospitalization Impact Scale among families with children hospitalized for cancer treatment","AIM: To make further modifications to and validate the psychometric properties of the Hospitalization Impact Scale. BACKGROUND: A child's repeated and prolonged hospitalization for cancer treatment can result in great changes for the entire family. A hospitalization-specific screening tool is needed to help clinical nurses identify families who are experiencing major impacts during their child's hospitalization. DESIGN: A cross-sectional study was employed to examine the psychometric properties of the Hospitalization Impact Scale. METHOD: The sample consisted of 253 families with children hospitalized for cancer treatment in four paediatric oncology departments in four hospitals in mainland China from September 2013 - March 2014. Parents completed the 36-item Hospitalization Impact Scale, demographic measures and the Family Impact Module of the Pediatric Quality of Life Inventory. Reliability, construct validity, known-group validity and concurrent validity were examined. RESULT: The revised Hospitalization Impact Scale included six factors containing 34 items. It demonstrated sound concurrent validity with the Family Impact Module of the Pediatric Quality of Life Inventory and excellent internal consistency. CONCLUSION: The revised Hospitalization Impact Scale met the standard psychometric criteria for reliability and validity. Thus, it could be applied in paediatric oncology departments to help nurses assess and identify families experiencing major impacts during a child's hospitalization for cancer treatment."," J Adv Nurs 71(8): 1958-1969.","China",2015,"Cancer",null,"PedsQL-FIM,HIS","Children and Adolescents","Validation",null,"China","Children and Adolescents","Cancer",null,"Validation",null,"PedsQL-FIM,HIS","2015:2018"]
[98,"Macedo, E. C., et al. (2015). \"Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review.\" Rev Lat Am Enfermagem 23(4): 769-777.",null,"Macedo, E. C., et al.","Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review","OBJECTIVE: to identify and analyze the evidence available regarding evaluation of burden and quality of life of mothers who are caregivers for children and adolescents with chronic illnesses. METHOD: an integrative review, undertaken in the electronic sources MEDLINE; Academic Search Premier; CINAHL; LILACS; SciELO and PubMed, between 2010 and 2014. RESULTS: among the 22 documents selected, there was a predominance of convenience samples and non-experimental transversal designs, at the levels IV and III2. The caregiver burden scales used were the Zarit Burden Interview and Montgomery-Borgatta Caregiver Burden Scale-Revised along with the following instruments for evaluating quality of life: The World Health Organization Quality of Life-BREF Scale; Self-report questionnaires; The Ulm Quality of Life Inventory for Parents of chronically ill children; Asthma Caregiver Quality of Life Questionnaire; and the Nottingham Health Profile. Quality-of-life appears to be influenced in a complex and interrelated way by the physical and mental health of the mothers who are caregivers, in accordance with their level of independence, social relationships, environment, and the extent to which they see themselves as burdened. CONCLUSION: the revealing of the results for the evaluation of burden and quality of life of mothers who are caregivers has implications for the planning and implementation of effective interventions, by the multidisciplinary team, if they are to relieve the burden."," Rev Lat Am Enfermagem 23(4): 769-777.","International",2015,"Unspecified",null,"Zarit,MB-CBS,QLIPCIC","Children and Adolescents","SLR",null,"International","Children and Adolescents","Unspecified",null,"SLR",null,"Zarit,MB-CBS,QLIPCIC","2015:2018"]
[99,"Machado, D. A., et al. (2014). \"Open-label observation of addition of etanercept versus a conventional disease-modifying antirheumatic drug in subjects with active rheumatoid arthritis despite methotrexate therapy in the Latin American region.\" J Clin Rheumatol 20(1): 25-33.",null,"Machado, D. A., et al.","Open-label observation of addition of etanercept versus a conventional disease-modifying antirheumatic drug in subjects with active rheumatoid arthritis despite methotrexate therapy in the Latin American region","BACKGROUND: Previous global studies examined etanercept (ETN) + methotrexate (MTX) for treatment of rheumatoid arthritis (RA), but included few subjects from Latin America. OBJECTIVE: The objective of this study was to compare the safety and efficacy of ETN + MTX versus a standard-of-care disease-modifying antirheumatic drug (DMARD) + MTX in Latin American subjects with moderate to severe active RA despite MTX therapy. METHODS: This open-label, active-comparator study (NCT00848354) randomized subjects 2:1 to ETN 50 mg/wk + MTX or investigator-selected DMARD (sulfasalazine or hydroxychloroquine) + MTX (ETN + MTX, n = 281; DMARD + MTX, n = 142). The primary end point was the proportion achieving American College of Rheumatology (ACR) 50 at week 24. Secondary end points included ACR20/70, disease activity score (DAS) 28 measures, and mean change in modified total Sharp score. Patient-reported outcomes were the Health Assessment Questionnaire, 36-item Short-Form, Hospital Anxiety and Depression Scale, Work Productivity and Activity Impairment: RA (WPAI:RA), and Caregiver Burden and Resource Utilization. Statistical analyses were stratified by country; chi test and analysis of covariance were used. Adverse events were monitored. RESULTS: More subjects achieved ACR50 at week 24 with ETN + MTX versus DMARD + MTX (62% vs 23%, respectively), in addition to secondary end points (P < 0.0001 for all); mean change in modified total Sharp score was lower for the ETN + MTX group (0.4 vs 1.4, respectively; P = 0.0270). Improvements in patient-reported outcomes favored ETN + MTX for Health Assessment Questionnaire, 36-item Short-Form, Hospital Anxiety and Depression Scale for depression, WPAI:RA, and Caregiver Burden and Resource Utilization emergency department visits for RA (P < 0.01). Overall, adverse events were similar between the groups (69% vs 68%,); serious adverse events were also similar (4% vs 1%). The rate of overall infections was higher with ETN + MTX (38%) than DMARD + MTX (22%, P </= 0.001). CONCLUSIONS: Consistent with published global data among RA patients with inadequate response to MTX, adding ETN to MTX demonstrated better efficacy than adding one other conventional DMARD to MTX. No new safety issues were observed. ETN + MTX provided favorable benefit-risk profile among RA patients from LA region."," J Clin Rheumatol 20(1): 25-33.","Brazil",2014,"Musculoskeletal",null,"CB-RU","Adults","Observational",null,"Brazil","Adults","Musculoskeletal",null,"Observational",null,"CB-RU","2010:2014"]
[100,"Machnicki, G., et al. (2009). \"Validity and reliability of the SF-36 administered to caregivers of patients with alzheimer's disease: evidence from a south american sample.\" Dement Geriatr Cogn Disord 28(3): 206-212.",null,"Machnicki, G., et al.","Validity and reliability of the SF-36 administered to caregivers of patients with alzheimer's disease: evidence from a south american sample","BACKGROUND: Being a caregiver of a patient with Alzheimer's disease is associated with impaired health status and declines in health-related quality of life (HRQoL). This paper evaluates the reliability and validity of the Argentinean version of the Medical Outcomes Study Short-Form Health Survey (SF-36) among caregivers of patients with Alzheimer's disease. METHODS: Forty-eight caregivers of Alzheimer's disease patients completed the SF-36, the Zarit Burden Interview (ZBI) and the Neuropsychiatric Inventory (NPI). Patients were evaluated for dementia severity using the Clinical Dementia Rating (CDR) and for cognitive status using the Mini Mental State Examination (MMSE). RESULTS: The SF-36 scales demonstrated adequate-to-strong internal consistency (Cronbach's alpha range: 0.72 to 0.92). Correlations between the SF-36 scales and the ZBI were moderate to strong (range: -0.19 to -0.79, all p < 0.01 expect for physical function). Significant correlations between the SF-36 scales and the CDR, MMSE and NPI were lower (range: -0.30 to -0.40, p < 0.001) and strongest in mental health-related scales of the SF-36. The SF-36 demonstrated good factorial validity. CONCLUSIONS: The Argentinean translation of the SF-36 is reliable and valid for use to measure the HRQoL of caregivers of patients with Alzheimer's disease."," Dement Geriatr Cogn Disord 28(3): 206-212.","Argentina",2009,"Dementia",null,"Zarit","Older Persons","Validation",null,"Argentina","Older Persons","Dementia",null,"Validation",null,"Zarit","2005:2009"]
[101,"Majani, G., et al. (2005). \"Impact of children's respiratory allergies on caregivers.\" Monaldi Arch Chest Dis 63(4): 199-203.",null,"Majani, G., et al.","Impact of children's respiratory allergies on caregivers","BACKGROUND: Despite the great attention that has been paid to HRQoL in children with respiratory allergy, few studies have addressed this aspect in relation to caregivers. The aim of our study was to evaluate the impact of childhood respiratory allergies on caregivers by means of a new method. METHODS: 119 parents of children suffering from allergies (75 suffering from asthma and 44 suffering from rhinitis) were recruited from three Italian Allergy Units. Parents were asked to complete the Disease Impact On Caregiver (DIOC), a new non disease specific questionnaire, validated on the Italian population. The questionnaire consists of 31 items grouped in four factors (Performance, Personal gratification, Psychophysical endurance, Socio-emotional domain) and covers the life aspects that could be affected by the assistance duties towards an ill family member. RESULTS: Child's asthma resulted to have a worse impact on many aspects of a parents' life than rhinitis. Differences resulted to be statistically significant in 19 aspects out of the 31 assessed. The worse impact of asthma versus rhinitis was confirmed in the following domains: Performance (24.0 +/- 18.2 vs 11.5 +/- 17.8), Personal gratification (26.3 +/- 20.5 vs 12.1 +/- 16.5) and Psychophysical endurance (35.0 +/- 24.8 vs 18.8 +/- 21.7). In the Socio-emotional domain no difference emerged. CONCLUSIONS: Compared to parents of rhinitics, parents of asthmatic children appear to be more compromised in their resistance to stress, mood, emotional stability, amount of spare time and leisure activities. Our results suggest the need of giving the due attention to these problems both in clinical practice and in research, in order to avoid possible interferences of the caregiver's distress in the optimization of treatment outcome."," Monaldi Arch Chest Dis 63(4): 199-203.","Italy",2005,"Respiratory",null,"DIOC","Children and Adolescents","Observational",null,"Italy","Children and Adolescents","Respiratory",null,"Observational",null,"DIOC","2005:2009"]
[102,"Malden, P. E., et al. (2008). \"Changes in parent-assessed oral health-related quality of life among young children following dental treatment under general anaesthetic.\" Community Dent Oral Epidemiol 36(2): 108-117.",null,"Malden, P. E., et al.","Changes in parent-assessed oral health-related quality of life among young children following dental treatment under general anaesthetic","OBJECTIVE: To estimate the nature and magnitude of changes in oral health-related quality of life (OHRQoL) among children having dental treatment under general anaesthetic (GA) and to examine the evaluative properties of the Child Oral Health-related Quality of Life Questionnaire (COHQOL). METHODS: Data from a consecutive clinical sample of the parents/caregivers of children receiving dental treatment under GA at Wellington and Kenepuru Hospitals were collected from parents using the Parental-Caregivers Perception Questionnaire (P-CPQ) and the Family Impact Scale (FIS), which both form part of the COHQOL Questionnaire. The first questionnaire was completed before treatment or while the participant's child was undergoing treatment. The follow-up questionnaire was completed 1-4 weeks afterward. Treatment-associated changes in OHRQoL were determined by comparing baseline and follow-up data for the mean scores and the prevalence of impacts. The discriminative properties of the instrument were confirmed and then its evaluative properties were assessed (by examining its test-retest reliability, responsiveness and longitudinal construct validity). The minimally important difference was determined for the overall scale and subscales. RESULTS: Complete baseline and follow-up data were obtained for 202 and 130 participants, respectively (64.4% follow-up rate). The evaluative properties of the P-CPQ and FIS were acceptable. There were substantial and highly statistically significant reductions in mean P-CPQ and FIS scores after treatment, with effect sizes ranging from moderate to large, depending on the subscale being examined. The minimally important difference was shown by almost two-thirds of the children treated. CONCLUSION: The provision of dental treatment under GA for young children with severe dental caries experience is associated with substantial and highly significant improvements in both their OHRQoL and in the impact on their families. The P-CPQ and the FIS show promise as evaluative measures for use in dental health services research."," Community Dent Oral Epidemiol 36(2): 108-117.","New Zealand",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation",null,"New Zealand","Children and Adolescents","Oral Health",null,"Validation",null,"FIS,P-CPQ","2005:2009"]
[103,"Mant, J., et al. (2000). \"Family support for stroke: a randomised controlled trial.\" Lancet 356(9232): 808-813.",null,"Mant, J., et al.","Family support for stroke: a randomised controlled trial","BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers. METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction. FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar. INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients."," Lancet 356(9232): 808-813.","UK",2000,"Stroke",null,"CSI","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[104,"Marin, D. B., et al. (2000). \"The Caregiver Activity Survey (CAS): longitudinal validation of an instrument that measures time spent caregiving for individuals with Alzheimer's disease.\" Int J Geriatr Psychiatry 15(8): 680-686.",null,"Marin, D. B., et al.","The Caregiver Activity Survey (CAS): longitudinal validation of an instrument that measures time spent caregiving for individuals with Alzheimer's disease","Family members incur substantial financial costs during the course of caring for an individual with Alzheimer's disease. Much of this cost is associated with time spent in caregiving tasks, including supervision and communication with the patient, and assisting with activities of daily living. We have previously reported on the cross sectional reliability and validity of a scale that measures time spent caregiving, the Caregiver Activity Survey (CAS). This study extends our results to a longitudinal study of the validity of the instrument. Forty-four outpatients with Alzheimer's disease who lived with a primary caregiver were followed over a period of 1 year 6 months. At six month intervals, the patients were administered the Mini Mental State Exam (MMSE), Alzheimer's Disease Assessment Scale (ADAS), and the Physical Self Maintenance Scale (PSMS). Caregivers completed the CAS. Over time, the CAS correlated significantly with the MMSE (r=-0.58, p=0.000), ADAS cognitive subscale (r=0.56, p=0. 000) and PSMS (r=0.49, p=0.000). As patients declined, caregivers spent less time communicating with and more time supervising the patient. Excluding the communication item, time spent caregiving increased significantly over time. This prospective study longitudinally validates the CAS with Alzheimer's patients."," Int J Geriatr Psychiatry 15(8): 680-686.","USA",2000,"Dementia",null,"CAS","Older Persons","Validation",null,"USA","Older Persons","Dementia",null,"Validation",null,"CAS","2000:2004"]
[105,"Marin, D., et al. (2003). \"Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer's disease.\" Int Psychogeriatr 15(4): 385-398.",null,"Marin, D., et al.","Impact of rivastigmine on costs and on time spent in caregiving for families of patients with Alzheimer's disease","BACKGROUND: Alzheimer's disease (AD) places a significant burden on health care systems worldwide. As new treatments are developed, their cost-effectiveness is often assessed to help health care professionals make informed decisions. In addition to the more common practice of assessing direct medical costs, indirect costs, including time spent in caregiving, should be evaluated. METHODS: This study examined the potential effects of the dual cholinesterase inhibitor rivastigmine (Exelon) on caregivers of patients with AD. Results from two 26-week, placebo-controlled trials have demonstrated the clinically relevant and statistically significant efficacy of rivastigmine (6-12 mg/day) compared to placebo, on cognition, activities of daily living, and global functioning. By delaying progression of AD, significant savings in caregiver burden are anticipated, as measured by time spent caregiving and its related costs. Data collected in a prospective, observational study of AD patients and their caregivers were used to establish the relationship between disease severity (based on Mini-Mental State Examination [MMSE] score) and time spent caregiving (according to the 5-item Caregivers Activity Survey score). A significant correlation was observed between the two scores (N = 43, r = -.56, p < .0001), demonstrating that more time for supervision from caregivers is required as the disease progresses. This finding was used to estimate the reduced caregiver burden resulting from the delay in disease progression that was demonstrated with use of rivastigmine. RESULTS: Over a 2-year period, the reduction in time spent in caregiving reached 691 hours for caregivers of patients with mild AD (MMSE score 21-30), resulting in a total savings of approximately 11,253 dollars. Treatment of patients with moderately severe AD was also evaluated. The trend was similar but the impact was less, suggesting an economic benefit to early therapy. CONCLUSION: Early diagnosis and a pharmacologic intervention that allows the patients to remain at home longer by delaying disease progression would have a beneficial impact on patients, caregivers, and payers, and should therefore be encouraged through initiatives designed to identify and treat patients early in the course of disease."," Int Psychogeriatr 15(4): 385-398.","USA",2003,"Dementia",null,"CAS","Older Persons","Observational",null,"USA","Older Persons","Dementia",null,"Observational",null,"CAS","2000:2004"]
[106,"Martin-Carrasco, M., et al. (2009). \"Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers.\" Int J Geriatr Psychiatry 24(5): 489-499.",null,"Martin-Carrasco, M., et al.","Effectiveness of a psychoeducational intervention program in the reduction of caregiver burden in Alzheimer's disease patients' caregivers","OBJECTIVES: Caregivers of patients with Alzheimer's disease (AD) experience physical and psychological stress due to the caring experience. This study evaluated the benefits of a Psychoeducational Intervention Program (PIP) on caregiver burden in southern Europe. METHODS: A multicentre, prospective, randomised study was conducted. One hundred and fifteen caregivers of patients with clinical diagnosis of AD (DSM-IV-TR criteria, mini-mental score = 10-26) and functional impairment (Lawton and Brody Scale and Katz Index) were recruited. Caregivers were randomised to receive either PIP (IG: intervention group, n = 60) or standard care (CG: control group, n = 55). PIP consisted of eight individual sessions over 4 months for teaching strategies for confronting problems of AD patient care. Caregivers' stress, quality of life and perceived health were measured using validated scales (Zarit, SF-36, GHQ-28, respectively) at baseline and after 4 and 10-months follow-up. RESULTS: Mean change in caregiver burden (Zarit baseline-Zarit final scores) was statistically significant (p = 0.0083) showing an improvement in the IG (-8.09 points) and a worsening in the CG (2.08 points). The IG showed significant improvements in all the well-being perception areas measured by the SF-36 and a significantly lower score in the GHQ-28 (p = 0.0004). 97.7% of caregivers and 88.6% of therapists considered PIP 'useful/very useful' at 4 months (the end of PIP) whereas at 10 months the estimates were 93.2% and 86.3%, respectively. CONCLUSIONS: Psychosocial training of caregivers can minimise caregiver distress and help them to develop problem-solving strategies. A PIP improves quality of life and the perceived health of caregivers of patients with AD."," Int J Geriatr Psychiatry 24(5): 489-499.","Spain",2009,"Dementia",null,"Zarit","Older Persons","Observational",null,"Spain","Older Persons","Dementia",null,"Observational",null,"Zarit","2005:2009"]
[107,"Martin-Carrasco, M., et al. (2014). \"Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: the EDUCA-II randomized trial.\" Alzheimer Dis Assoc Disord 28(1): 79-87.",null,"Martin-Carrasco, M., et al.","Effectiveness of a psychoeducational intervention group program in the reduction of the burden experienced by caregivers of patients with dementia: the EDUCA-II randomized trial","We conducted a multicenter, prospective, evaluator-blinded, 2-arm parallel randomized trial to compare the effectiveness of a group psychoeducational intervention (PIP) with that of standard care in dementia caregivers. The primary outcome was the burden experience evaluated by the Zarit Burden Interview. Secondary outcomes were psychological distress evaluated with the scaled General Health Questionnaire-28 items, and quality of life evaluated with the Short-Form Health Survey 12. Effectiveness endpoint was at 4 months since inception. Statistical analyses used complete case and intention-to-treat analysis (ITT). The trial recruited 238 caregivers from 22 research sites (115 randomized to PIP, 123 randomized to standard care). No differences were found in the Zarit Burden Interview scores (complete case analysis: mean difference=-1.02, 95% confidence interval=-4.41 to 2.37; ITT analysis: MD=-0.55, 95% confidence interval=-3.64 to 2.55), the Short-Form Health Survey 12 domain scores (all P>0.05), and total General Health Questionnaire-28 items scores and some of its subscales (all P>0.05) except the anxiety and insomnia subscale for the ITT analysis (P=0.03). In summary, PIP in modality of group intervention was not better than standard care to reduce caregiver burden and overall psychological distress or to improve quality-of-life domains. EDUCA-II trial registry: ISRCTN14411440."," Alzheimer Dis Assoc Disord 28(1): 79-87.","Spain",2014,"Dementia",null,"Zarit","Older Persons","RCT",null,"Spain","Older Persons","Dementia",null,"RCT",null,"Zarit","2010:2014"]
[108,"Martinez-Martin, P., et al. (2007). \"Caregiver burden in Parkinson's disease.\" Mov Disord 22(7): 924-931; quiz 1060.",null,"Martinez-Martin, P., et al.","Caregiver burden in Parkinson's disease","Parkinson's disease (PD) is a neurodegenerative disorder that imposes an important burden upon the patient's caregiver. This study aims at assessing caregiver burden (CB) and analyzing its relationship with sociodemographic, emotional, and functional factors, as well as health-related quality of life (HRQoL). The following measures were applied to 80 patients with PD: the Hospital Anxiety and Depression Scale (HADS); the EuroQoL (for HRQoL); and PD-specific measures (Hoehn and Yahr staging and SCOPA-Motor ADL subscale). Patients' main caregivers completed the HADS, SF-36, EuroQoL, and Zarit CB Inventory (ZCBI). The ZCBI was found to be a valid and reliable measure in the context of PD. There was a significant association between CB and caregivers' HRQoL (r = -0.29 to -0.64). Mental aspects of caregivers' HRQoL and burden were affected by disability and disease severity. The presence of caregivers' depression had a significant negative effect on both CB and HRQoL. The main predictors of CB were caregivers' psychological well-being, patients' mood and clinical aspects of PD (disability and severity), and HRQoL of patients and caregivers. This study underscores the need to consider the impact of PD on caregivers' well-being."," Mov Disord 22(7): 924-931; quiz 1060.","Spain",2007,"Parkinson's",null,"Zarit","Adults","Observational",null,"Spain","Adults","Parkinson's",null,"Observational",null,"Zarit","2005:2009"]
[109,"Martinez-Martin, P., et al. (2008). \"Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.\" Mov Disord 23(12): 1673-1680.",null,"Martinez-Martin, P., et al.","Burden, perceived health status, and mood among caregivers of Parkinson's disease patients","The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL."," Mov Disord 23(12): 1673-1680.","Spain",2008,"Parkinson's",null,"Zarit","Adults","Observational",null,"Spain","Adults","Parkinson's",null,"Observational",null,"Zarit","2005:2009"]
[110,"McGrath, C., et al. (2008). \"Translation and evaluation of a Chinese version of the Child Oral Health-related Quality of Life measure.\" Int J Paediatr Dent 18(4): 267-274.",null,"McGrath, C., et al.","Translation and evaluation of a Chinese version of the Child Oral Health-related Quality of Life measure","OBJECTIVE: This study aims to translate and evaluate the performance of a Chinese version of the Child Oral Health-related Quality of Life (COHQoL) measure composed of the Child Perception Questionnaire (CPQ), Parental Perception Questionnaire (PPQ), and Family Impact Scale (FIS). BASIC RESEARCH DESIGN: Chinese versions of the measures were derived through a forward-backward translation. A consecutive sample of 168 children attending paediatric dental and orthodontic clinics in Hong Kong were recruited along with their attending primary caregiver. Children self-completed the 37-item CPQ and their attending primary caregiver self-completed the 31-item PPQ and 14-item FIS consecutively and independently. Reassessments were conducted prior to their next appointment. RESULTS: CPQ, PPQ, and FIS scores were associated with children's global rating of oral health (P < 0.05) and oral well-being (P < 0.05) supporting their construct validity. In addition, variations in CPQ, PPQ, and FIS were apparent with respect to patient group (P < 0.05) supporting their ability to distinguish between patient groups. Cronbach alpha values (internal reliability) and intraclass correlation coefficient values (test-retest reliability) for the three measures were > 0.80. CONCLUSION: A Chinese version of the three components of the COHQoL measure was developed with minor modifications. In psychometric testing, the validity of the three components was supported and they demonstrated acceptable reliability."," Int J Paediatr Dent 18(4): 267-274.","China",2008,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation",null,"China","Children and Adolescents","Oral Health",null,"Validation",null,"FIS,P-CPQ","2005:2009"]
[111,"McKinney, M., et al. (2002). \"Evaluation of cognitive assessment in stroke rehabilitation.\" Clin Rehabil 16(2): 129-136.",null,"McKinney, M., et al.","Evaluation of cognitive assessment in stroke rehabilitation","OBJECTIVE: To assess the effect of cognitive assessment on the functional outcome of stroke patients and quality of life for both patients and their carers. DESIGN: A multicentre, single-blind, randomized controlled trial. SETTING AND PARTICIPANTS: Two hundred and twenty-eight stroke patients were recruited from hospital wards in three UK centres. INTERVENTIONS: Patients were screened for cognitive impairment and randomly allocated to either routine care (116 patients) or routine care plus a detailed cognitive assessment (112 patients). MAIN OUTCOME MEASURES: Outcome was assessed three and six months after recruitment by an independent assessor blind to the intervention on Extended ADL, Cognitive Failures Questionnaire, General Health Questionnaire-28 for patients and carers and Carer Strain Index. RESULTS: There was no significant difference between the two groups in patients' functional outcome, perceived cognitive ability, level of psychological distress or satisfaction with care. There was a trend for the assessment group to have lower levels of carer strain (p = 0.06). CONCLUSIONS: The provision of information about cognitive assessment in stroke rehabilitation may decrease carer strain."," Clin Rehabil 16(2): 129-136.","UK",2002,"Stroke",null,"CSI","Adults","RCT",null,"UK","Adults","Stroke",null,"RCT",null,"CSI","2000:2004"]
[112,"McMillan, S. C. and M. Mahon (1994). \"The impact of hospice services on the quality of life of primary caregivers.\" Oncol Nurs Forum 21(7): 1189-1195.",null,"McMillan, S. C. and M. Mahon","The impact of hospice services on the quality of life of primary caregivers","PURPOSE/OBJECTIVES: To evaluate the effects of hospice services on the quality of life of primary caregivers and to evaluate the validity and reliability of a new tool. DESIGN: Exploratory, descriptive. SETTING: A nonprofit hospice in Florida; clients are cared for primarily in the home. SAMPLE: 68 adult primary caregivers of 68 patients with cancer enrolled in hospice care and 62 noncaregiving adults. METHODS: Subjects were recruited on admission to hospice and completed the Caregiver Quality of Life Index (CQLI) and the Hospice Quality of Life Index (HQLI) on admission and during week four of hospice care. MAIN RESEARCH VARIABLES: Caregivers' assessment of their own physical, social, financial, and emotional quality of life; patients' assessment of their physical, psychological, spiritual, social, and financial well-being. FINDINGS: No significant differences were found in caregiver quality-of-life scores from admission to week four, and no correlations existed between quality-of-life scores and age or education. A significant positive correlation was found between the caregivers' quality of life and their estimate of the patients' quality of life. Evidence exists that the CQLI is valid and reliable. CONCLUSIONS: Caregivers of terminally ill people with cancer can maintain their quality of life during the first month of hospice care. The caregiver's perception of the patient's quality of life may affect the caregiver's quality of life. IMPLICATIONS FOR NURSING PRACTICE: When offering support to primary caregivers, the hospice team should include the four domains (physical, emotional, social, and financial) and should focus on the interrelatedness of the patient's and caregiver's quality of life."," Oncol Nurs Forum 21(7): 1189-1195.","USA",1994,"Cancer",null,"CQLI","Unspecified","Observational",null,"USA","Unspecified","Cancer",null,"Observational",null,"CQLI","1990:1994"]
[113,"Mei, Y., et al. (2017). \"Validity and reliability of Chinese version of Adult Carer Quality of Life questionnaire (AC-QoL) in family caregivers of stroke survivors.\" PLoS One 12(11): e0186680.",null,"Mei, Y., et al.","Validity and reliability of Chinese version of Adult Carer Quality of Life questionnaire (AC-QoL) in family caregivers of stroke survivors","The Adult Carer Quality of Life questionnaire (AC-QoL) is a reliable and valid instrument used to assess the quality of life (QoL) of adult family caregivers. We explored the psychometric properties and tested the reliability and validity of a Chinese version of the AC-QoL with reliability and validity testing in 409 Chinese stroke caregivers. We used item-total correlation and extreme group comparison to do item analysis. To evaluate its reliability, we used a test-retest reliability approach, intraclass correlation coefficient (ICC), together with Cronbach's alpha and model-based internal consistency index; to evaluate its validity, we used scale content validity, confirmatory factor analysis (CFA) and exploratory factor analysis (EFA) via principal component analysis with varimax rotation. We found that the CFA did not in fact confirm the original factor model and our EFA yielded a 31-item measure with a five-factor model. In conclusions, although some items performed differently in our analysis of the original English language version and our Chinese language version, our translated AC-QoL is a reliable and valid tool which can be used to assess the quality of life of stroke caregivers in mainland China. Chinese version AC-QoL is a comprehensive and good measurement to understand caregivers and has the potential to be a screening tool to assess QoL of caregiver."," PLoS One 12(11): e0186680.","China",2017,"Stroke",null,"AC-QOL","Adults","Validation",null,"China","Adults","Stroke",null,"Validation",null,"AC-QOL","2015:2018"]
[114,"Miaskowski, C., et al. (1997). \"Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes.\" Pain 72(1-2): 217-226.",null,"Miaskowski, C., et al.","Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes","The purposes of this study were to determine if there were differences in pain intensity scores, pain duration scores, mood states, and quality of life of oncology outpatients whose pain intensity scores were congruent with their family caregivers compared to patients whose pain intensity scores were non-congruent and to determine if there were differences in mood states, health status, and caregiver strain between family caregivers whose pain intensity scores were congruent with their family members and those family caregivers whose pain intensity scores were non-congruent. A total of 78 patient-caregiver dyads participated in the study. Patients completed a Demographic Questionnaire, a Cancer Pain Questionnaire, the Profile of Mood States, and the Multidimensional Quality of Life Scale-Cancer 2. Family caregivers completed a demographic questionnaire, the Profile of Mood States, the Caregiver Strain Index, and the Medical Outcome Study Short-Form Health Survey. Both patients and family caregivers rated the patient's pain intensity using a visual analogue scale (VAS). Patients in the non-congruent dyads (i.e. difference of >10 on the VAS score) had significantly more mood disturbance and a poorer quality of life than patients in the congruent dyads. Family caregivers in the non-congruent dyads had significantly higher caregiver strain score than caregivers in the congruent dyads. These findings suggest that differences in the perception of the pain experience between patients and their family caregivers is associated with deleterious outcomes for the patient and their family caregivers."," Pain 72(1-2): 217-226.","USA",1997,"Cancer",null,"CSI","Unspecified","Observational",null,"USA","Unspecified","Cancer",null,"Observational",null,"CSI","1995:1999"]
[115,"Miyashita, M., et al. (2006). \"Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan.\" Health Qual Life Outcomes 4: 52.",null,"Miyashita, M., et al.","Validation of the Burden Index of Caregivers (BIC), a multidimensional short care burden scale from Japan","BACKGROUND: We constructed a concise multidimensional care burden scale that reflects circumstances unique to Japan, with a focus on intractable neurological diseases. We surveyed 646 family caregivers of patients with intractable neurological diseases or stroke using 28 preliminary care burden scale items obtained from qualitative research. The results were used to finalize the feeling of care burden scale (BIC: burden index of caregivers), and verify its reliability and validity. METHODS: The survey was conducted among caregivers providing home health care to patients with intractable neurological diseases (PD [Parkinson's disease], SCD [spinocerebellar degeneration], MSA [multiple system atrophy], and ALS [amyotrophic lateral sclerosis]) or CVA (cerebrovascular accident) using a mailed, self-administered questionnaire between November, 2003 and May, 2004. RESULTS: Response rates for neurological and CVA caregivers were 50% and 67%, respectively, or 646 in total (PD, 279; SCD, 78; MSA, 39; ALS, 30; and CVA, 220). Item and exploratory factor analyses led to a reduction to 11 items, comprising 10 items from the 5 domains of time-dependent burden, emotional burden, existential burden, physical burden, and service-related burden; and 1 item on total burden. Examination of validity showed a moderate correlation between each domain of the BIC and the SF-8 (Health related quality of life scale, Short Form-8), while the correlation coefficient of the overall BIC and CES-D was 0.62. Correlation between the BIC and ZBI, a preexisting care burden scale, was high (r = 0.84), while that with the time spent on providing care was 0.47. The ICC (Intraclass correlation coefficient) by test-retest reliability was 0.83, and 0.68 to 0.80 by individual domain. CONCLUSION: These results show that the BIC, a new care burden scale comprising 11 items, is highly reliable and valid."," Health Qual Life Outcomes 4: 52.","Japan",2006,"Parkinson's,ALS,Neurology,Stroke",null,"Zarit,BIC","Adults","Validation",null,"Japan","Adults","Parkinson's,ALS,Neurology,Stroke",null,"Validation",null,"Zarit,BIC","2005:2009"]
[116,"Morales-Gonzales, J. M., et al. (2004). \"A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study.\" Mult Scler 10(1): 47-54.",null,"Morales-Gonzales, J. M., et al.","A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study","OBJECTIVE: To describe a holistic and comprehensive approach to the assessment of sufferer's perceptions of health-related quality of life (HRQoL) in a cohort of multiple sclerosis (MS) patients. METHODS: The GEDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functional Assessment of Multiple Sclerosis quality of life instrument Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. RESULTS: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9+/-0.9 years. Age, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Qualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. On the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients' physical disability. Furthermore, primary caregivers described the influence of MS on their own occupational status, their nonacceptance of the disease, a perception of a lack of support by other members of the family as well as a 'selfish and intransigent' attitude of the patients themselves. CONCLUSIONS: The analysis of the GEDMA cohort provides valuable information that helps clarify the impact of MS on patients' HRQoL."," Mult Scler 10(1): 47-54.","Spain",2004,"Multiple Sclerosis",null,"Zarit","Adults","Observational",null,"Spain","Adults","Multiple Sclerosis",null,"Observational",null,"Zarit","2000:2004"]
[117,"Morimoto, T., et al. (2003). \"Caregiver burden and health-related quality of life among Japanese stroke caregivers.\" Age Ageing 32(2): 218-223.",null,"Morimoto, T., et al.","Caregiver burden and health-related quality of life among Japanese stroke caregivers","OBJECTIVE: the present study had two main purposes: 1. To examine the relationship between caregiver burden and health-related quality of life in family caregivers of older stroke patients in Japan; and 2. To examine which characteristics of the caregiving situation significantly relate to increased burden. METHODS: subjects (n=100) were recruited from seven randomly selected neurological hospitals with out-patient rehabilitation clinics in western Japan and interviewed using the Zarit Burden Interview, the Modified Barthel Index, the Geriatric Depression Scale and the SF-12 Health Survey for health-related quality of life. RESULTS: increased caregiver burden was significantly related to worsening health-related quality of life, particularly worsening mental health (Geriatric Depression Scale and SF-12 items), even after controlling for caregiver age, sex, chronic illness, average caregiving hours/day, and functional dependence of the care-recipient. DISCUSSION: findings indicate that increased burden significantly relates to decreased health-related quality of life among stroke caregivers. In addition, the prevalence of depressive symptoms among caregivers was twice that of community dwelling older people. Roughly 52% of caregivers had Geriatric Depression Scale scores that warranted further evaluation. Despite the prevalence of depressive symptoms only one caregiver had received any psychiatric care during their caregiving tenure."," Age Ageing 32(2): 218-223.","Japan",2003,"Stroke",null,"Zarit","Older Persons","Observational",null,"Japan","Older Persons","Stroke",null,"Observational",null,"Zarit","2000:2004"]
[118,"Murphy, K. R., et al. (2003). \"Effects of budesonide inhalation suspension compared with cromolyn sodium nebulizer solution on health status and caregiver quality of life in childhood asthma.\" Pediatrics 112(3 Pt 1): e212-219.",null,"Murphy, K. R., et al.","Effects of budesonide inhalation suspension compared with cromolyn sodium nebulizer solution on health status and caregiver quality of life in childhood asthma","OBJECTIVE: To compare the effects of 2 nebulizable controller asthma medications on caregiver and pediatric quality of life. METHODS: In this 52-week, randomized trial, children aged 2 to 6 years with mild to moderate persistent asthma received budesonide inhalation suspension 0.5 mg (total daily dose) once or twice daily (n = 168) or cromolyn sodium nebulizer solution 20 mg 4 times daily (n = 167) for 8 weeks, with dosage adjustment thereafter at the investigators' discretion. The Pediatric Asthma Caregiver's Quality of Life Questionnaire (PACQLQ), Compliance/Caregiver Satisfaction Questionnaire (CCSQ), Modified Child Health Questionnaire-Parent Form 50 (CHQ-PF50), and Functional Status-II(R) (FS-II[R]) Questionnaire were administered at baseline and weeks 8, 28, and 52. Global assessments of ease of asthma management and child health status were obtained from caregivers and physicians at the end of the study. RESULTS: Improvements from baseline in domain-specific (activities and emotional function) and total PACQLQ scores were greater at each time point (weeks 8, 28, and 52) for caregivers of patients treated with budesonide compared with caregivers of patients receiving cromolyn sodium. Only the budesonide group met the criterion for a clinically important improvement (>or=0.5 unit change) in all PACQLQ domains by week 8, which was maintained at weeks 28 and 52. Moreover, improvements surpassed the criterion for moderate clinical importance (1.0 unit change) in all PACQLQ domains for the budesonide group, but this level of improvement was only achieved in the activities domain (at week 28) for the cromolyn sodium group. Based on the CCSQ, budesonide resulted in greater caregiver satisfaction, treatment convenience, ease of use, and compliance compared with cromolyn sodium. Thus, 90.7% of caregivers in the budesonide group were \"completely or very satisfied\" compared with 53.4% in the cromolyn sodium group. Over half (54.6%) of caregivers in the budesonide group rated budesonide \"highly or very convenient\" compared with 23% for cromolyn sodium; 77% rated budesonide \"extremely or very easy\" to use compared with 47% for cromolyn. Adherence with daily medication regimens was reported for 76% of children in the budesonide group compared with 57% in the cromolyn sodium group. Child health status, as indicated by mean FS-II(R) scores, showed improvements from baseline in both groups at weeks 8, 28, and 52. There was a trend for these improvements to be superior in the budesonide group. Additionally, budesonide was superior to cromolyn sodium in caregiver and physician global assessments. At the end of the study, 76% of caregivers of children receiving budesonide reported asthma management to be \"a great deal easier\" compared with the start of the study, and 74% rated the overall health status of their child as \"much better now than 1 year ago.\" In contrast, only 29% and 37% of caregivers whose children received cromolyn sodium provided these respective ratings. CONCLUSIONS: Budesonide inhalation suspension improved the quality of life for caregivers of children with asthma. Caregivers of children treated with budesonide had significantly fewer limitations in daily activities and emotional functioning compared with caregivers of children treated with cromolyn sodium nebulizer solution. The improvements in caregiver quality of life occurred earlier with budesonide compared with cromolyn sodium. Only caregivers in the budesonide group had a clinically important mean change from baseline in all PACQLQ domains by week 8. These benefits were maintained at week 52. Children treated with budesonide inhalation suspension and cromolyn sodium experienced improvements in health status, assessed using the FS-II(R). The greatest differences between treatments were seen in the disease-specific portion of the FS-II(R), which relates impairments in functional status to the child's illness. Caregiver and physician global assessment indicated significantly better overall child health after 1 year of treatment with budesonide, supporting an improvement in health status. Clinical trials in children 4 to 16 years of age with asthma have demonstrated greater effectiveness of inhaled corticosteroids versus cromolyn sodium on several clinical measures of efficacy. Measures of asthma control in this study, reported in detail elsewhere [Leflein et al. Pediatrics 2002;109:866-872], also have shown greater improvements with budesonide therapy. Treatment with budesonide inhalation suspension resulted in a significantly lower mean rate of asthma exacerbations, significantly longer times to first asthma exacerbation, significantly longer times to first additional use of chronic asthma therapy, and significant improvements in asthma symptom scores and breakthrough medication use compared with cromolyn sodium therapy. Additionally, children receiving budesonide inhalation suspension experienced more symptom-free days and episode-free days compared with children receiving cromolyn sodium. Safety profiles were similar between the 2 treatment groups. Budesonide inhalation suspension was associated with significantly greater caregiver satisfaction, convenience, ease of use, and compliance compared with cromolyn sodium nebulizer solution. This greater caregiver satisfaction and quality of life may be related to the greater asthma control achieved in children treated with budesonide therapy compared with cromolyn sodium. In addition, the convenience of once- or twice-daily dosing with budesonide inhalation suspension, compared with 3- or 4-times-daily dosing of cromolyn sodium, may decrease caregiver burden and enhance the willingness of caregivers to adhere to treatment regimens prescribed for their young children with asthma. This effect on caregiver adherence could further improve treatment effectiveness. This is the first clinical trial comparing the effects of a nebulized corticosteroid with that of an alternative nebulized therapy on quality of life in young children with asthma and their families. Compared with nebulized cromolyn sodium, budesonide inhalation suspension not only provides better overall child health status and asthma management, but greater caregiver quality of life and greater caregiver satisfaction, convenience, ease of use, and compliance."," Pediatrics 112(3 Pt 1): e212-219.","USA",2003,"Respiratory",null,"CCSQ","Children and Adolescents","RCT",null,"USA","Children and Adolescents","Respiratory",null,"RCT",null,"CCSQ","2000:2004"]
[119,"Nauser, J. A., et al. (2011). \"A new instrument to measure quality of life of heart failure family caregivers.\" J Cardiovasc Nurs 26(1): 53-64.",null,"Nauser, J. A., et al.","A new instrument to measure quality of life of heart failure family caregivers","BACKGROUND AND PURPOSE: Family caregivers of heart failure (HF) patients experience poor physical and mental health leading to poor quality of life. Although several quality-of-life measures exist, they are often too generic to capture the unique experience of this population. The purpose of this study was to evaluate the psychometric properties of the Family Caregiver Quality of Life (FAMQOL) Scale that was designed to assess the physical, psychological, social, and spiritual dimensions of quality of life among caregivers of HF patients. SAMPLE AND METHODS: Psychometric testing of the FAMQOL with 100 HF family caregivers was conducted using item analysis, Cronbach alpha, intraclass correlation, factor analysis, and hierarchical multiple regression guided by a conceptual model. Caregivers were predominately female (89%), white, (73%), and spouses (62%). RESULTS: Evidence of internal consistency reliability (alpha=.89) was provided for the FAMQOL, with item-total correlations of 0.39 to 0.74. Two-week test-retest reliability was supported by an intraclass correlation coefficient of 0.91. Using a 1-factor solution and principal axis factoring, loadings ranged from 0.31 to 0.78, with 41% of the variance explained by the first factor (eigenvalue=6.5). With hierarchical multiple regression, 56% of the FAMQOL variance was explained by model constructs (F8,91=16.56, P<.001). Criterion-related validity was supported by correlations with SF-36 General (r=0.45, P<.001) and Mental (r=0.59, P<.001) Health subscales and Bakas Caregiving Outcomes Scale (r=0.73, P<.001). Evidence of internal and test-retest reliability and construct and criterion validity was provided for physical, psychological, and social well-being subscales. CONCLUSIONS: The 16-item FAMQOL is a brief, easy-to-administer instrument that has evidence of reliability and validity in HF family caregivers. Physical, psychological, and social well-being can be measured with 4-item subscales. The FAMQOL scale could serve as a valuable measure in research, as well as an assessment tool to identify caregivers in need of intervention."," J Cardiovasc Nurs 26(1): 53-64.","India",2011,"Cardiac",null,"BCOS,FAMQOL","Adults","Validation",null,"India","Adults","Cardiac",null,"Validation",null,"BCOS,FAMQOL","2010:2014"]
[120,"Okcin, F. and A. Karadakovan (2012). \"Reliability and validity of the quality of life -family version (QOL-FV) in Turkish family caregivers of patients with cancer.\" Asian Pac J Cancer Prev 13(9): 4235-4840.",null,"Okcin, F. and A. Karadakovan","Reliability and validity of the quality of life -family version (QOL-FV) in Turkish family caregivers of patients with cancer","OBJECTIVES: Family caregivers (FCs) are often the primary source of social and emotional support for cancer patients and play a major role in how well they manage their illness. The aim of this study was to create an Turkish version of the Quality of Life - Family Version (QOL-FV) and to evaluate its psychometric properties in a sample of FCs of cancer patients. MATERIALS AND METHODS: This study was carried out with the FCs of 218 patients with cancer. Data were collected with a Demographic Questionnaire and the QOL-FV and The Multidimentional Scale of Perceived Social Support (MSPSS). The QOL-FV was developed by Ferrell and Grant and is composed of 4 subdimensions. Linguistic validity, translation, back translation, and content validity were tested with expert opinions. Test-retest reliability, and internal consistency reliability were assessed. Construct validity was tested by factor analysis and with the scale of the MSPSS. RESULTS: The family caregivers were between the ages of 46-56 (32.6%), a great number of them being male (52.8%). The scale is made up of four subdimensions. The result of the test-retest analysis of this scale was calculated as r:0.86. As a result of the reliability analysis, six items were eliminated from the scale, factor analyses were fulfilled according to varimax transformation through the method of principal components. Four new subdimensions were restrustured at the end of the analysis. The scale of Cronbach alphacoefficient was calculated as 0.90. Concurrent validity showed low correlations with the MSPSS (r=0.29). CONCLUSIONS: The QOL-FV, adapted into Turkish, was found to have sufficient reliability and validity."," Asian Pac J Cancer Prev 13(9): 4235-4840.","Turkey",2012,"Cancer",null,"QOL-FV,MSPSS","Unspecified","Validation",null,"Turkey","Unspecified","Cancer",null,"Validation",null,"QOL-FV,MSPSS","2010:2014"]
[121,"Palma, E., et al. (2012). \"An observational study of family caregivers' quality of life caring for patients with a stoma.\" Gastroenterol Nurs 35(2): 99-104.",null,"Palma, E., et al.","An observational study of family caregivers' quality of life caring for patients with a stoma","The management of stomas following surgical resection often falls to family caregivers. The purpose of this observational survey was to investigate the family caregivers' quality of life caring for a patient with ostomy. Between August 2008 and July 2009, 144 eligible Italian family members caring for a patient with ostomy were evaluated using two questionnaires: the Caregiver Quality of Life Cancer survey and the Caregiver Burden Inventory. Both questionnaires have similar capabilities to explore the burden of caregiving. The Caregiver Quality of Life Cancer reported a total Quality of Life score of 97.11 (SD = 14.36), whereas the Caregiver Burden Inventory score for the sample was 51.95 (SD = 10.72). Variables of interest included health, self-perception, nationality, society and territory in which the person lives, education, job, standard of living, house, family, relations with partner, and friendship. Only those who provided complete data (n = 123) were included in the analyses. Data show that generally the family caregiver is married (92%), female (97%), and aged 55.15 years (SD = 16.5). The burden of assistance is higher in younger single caregivers, whereas those with children or who are aged have economic concerns. Loss of spirituality is reported in people aged 30-49 and 71-90 years. Family Caregivers' Quality of Life is poor. Further research is needed to determine the effectiveness of social and economic interventions to help family caregivers in the management of long-term assistance."," Gastroenterol Nurs 35(2): 99-104.","Italy",2012,"Cancer",null,"CBI","Unspecified","Observational",null,"Italy","Unspecified","Cancer",null,"Observational",null,"CBI","2010:2014"]
[122,"Pani, S. C., et al. (2013). \"Parental perceptions of the oral health-related quality of life of autistic children in Saudi Arabia.\" Spec Care Dentist 33(1): 8-12.",null,"Pani, S. C., et al.","Parental perceptions of the oral health-related quality of life of autistic children in Saudi Arabia","The aim of this study was to use parental perception to assess the Oral Health Related Quality of Life (OHRQoL) of children with Autism. A total of 59 families of children with Autism who had an unaffected sibling were cross-matched for age and gender of the affected child with families with no autistic children. The parents were administered the Parental Perception Questionnaire (P-CPQ) and the Family impact scale (FIS) components of and Arabic version of the Child Oral Health Related Quality of Life questionnaire (COHRQL). The P-CPQ scores of Children with Autism were compared with those of their unaffected siblings and those of children from families with no autistic child, while the FIS scores were compared between families with and without an autistic child. Regression models were constructed to show the association of sociodemographic factors on the OHRQoL of autistic children. The results of this study seem to suggest that childhood autism results in a reduced OHRQoL for both the affected child as well as the family. The apparent reduced parental concern with unaffected siblings of autistic children, when compared to parental concern towards children in families with no autistic child is an area that could merit further research."," Spec Care Dentist 33(1): 8-12.","Saudi Arabia",2013,"Developmental",null,"FIS,P-CPQ","Children and Adolescents","Observational",null,"Saudi Arabia","Children and Adolescents","Developmental",null,"Observational",null,"FIS,P-CPQ","2010:2014"]
[123,"Papastavrou, E., et al. (2014). \"Factors associated with quality of life among family members of patients with dementia in Cyprus.\" Int Psychogeriatr 26(3): 443-452.",null,"Papastavrou, E., et al.","Factors associated with quality of life among family members of patients with dementia in Cyprus","BACKGROUND: Numerous studies have reported that caring for a person with dementia is a stressful experience. Nevertheless, quality of life (QoL) measures have commonly focused on patients, while factors that influence caregivers' QoL have not been clearly identified. In order to contribute to the understanding of caregivers' QoL, we explored how QoL among caregivers is related to their perceived level of burden, their reported number of depressive symptoms, and the level of care recipients' dependency. METHODS: Seventy-six caregivers referred by the two main referral centers of patients with dementia in Cyprus participated in a cross-sectional survey with a descriptive correlational design. Caregivers completed four instruments, measuring burden (ZBI), depression (CES-D), quality of life-Alzheimer's disease (QoL-AD), and activities of daily living (ADL) of the care recipients and provided socio-demographic information. RESULTS: The majority of the participants scored high levels of burden (M = 43.32/SD = 15.23) and depression (59.2% scored over the cut-off point of 16). QoL was only moderate (M = 30.89/SD = 8.21) and negatively correlated with burden (r = -32, p = 0.01) and depression (r = -0.296, p < 0.05). Only a weak correlation was observed between QoL and ADL (r = 0.167, p = 0.15). Hierarchical multiple regression analyses revealed that overall burden scores and income were associated with QoL, explaining 20% of the overall variance of the caregiver's QoL. CONCLUSION: Further research is necessary to investigate which additional domains determine QoL and further our understanding of the factors that may reduce the burden imposed on dementia caregivers."," Int Psychogeriatr 26(3): 443-452.","Cyprus",2014,"Dementia",null,"Zarit","Older Persons","Observational",null,"Cyprus","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[124,"Pemberton, J., et al. (2012). \"Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study.\" J Pediatr Surg 47(5): 999-1004.",null,"Pemberton, J., et al.","Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study","INTRODUCTION: High-quality prospective cohort studies are needed to answer research questions focused on prognosis. To determine the feasibility of conducting this type of research, a prospective cohort study focused on investigating health-related quality of life (HRQoL) of caregivers of children who require a gastrostomy (G) tube at the McMaster Children's Hospital was piloted from November 2009 to May 2011. METHODS: Recruitment began after research ethics board approval. Feasibility data were collected on all caregivers of patients assessed for G tube placement by a pediatric surgeon including recruitment status, protocol compliance, and HRQoL. Data were collected at 1 month and 2 weeks before surgery and 2 weeks and 3, 6, 9, and 12 months after surgery. Health-related quality of life measures included the Short Form 36v2, the Caregiver Strain Index, and the Parent Experience of Childhood Illness. RESULTS: A total of 117 G procedures were conducted, and 39 caregivers met eligibility criteria. Thirty-one caregivers were enrolled (79.5% recruitment rate), 8 parents were not interested, and 26 were missed. Protocol adherence to the follow-up schedule is high (91.3%). CONCLUSION: Conducting high-level research with long-term follow-up in pediatric surgery is challenging. Factors including low prevalence of patients and competing priorities for busy clinicians indicate that multicenter collaboration is essential to research success in this field."," J Pediatr Surg 47(5): 999-1004.","Canada",2012,"Unspecified",null,"CSI","Children and Adolescents","Observational",null,"Canada","Children and Adolescents","Unspecified",null,"Observational",null,"CSI","2010:2014"]
[125,"Pentek, M., et al. (2016). \"Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe.\" Eur J Health Econ 17 Suppl 1: 89-98.",null,"Pentek, M., et al.","Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe","OBJECTIVES: To assess the health-related quality of life (HRQOL) of patients with mucopolysaccharidosis (MPS) and their caregivers and to quantify the disease-related costs from a societal perspective. METHODS: In the context of a multi-country study of rare diseases (BURQOL-RD project), a cross-sectional survey was performed among MPS patients in seven European countries. Data on demographic characteristics, health resource utilization, informal care, and loss of labor productivity were collected. The EQ-5D, Barthel index (BI), and Zarit burden interview (ZBI) questionnaires were used to assess patients' and their informal caregivers' quality of life, patients' functional ability, and caregivers' burden, respectively. RESULTS: Altogether, 120 patients (children 62 %, females 40 %) and 66 caregivers completed the questionnaire. Patients' mean age was 16.5 years and median age at diagnosis was 3 years. Adult patients' average EQ-5D and EQ VAS scores varied across countries from 0.13 to 0.43 and 30.0 to 62.2, respectively, mean BI was 46.7, and ZBI was 32.7. Mean informal care time was 51.3 h/week. The mean total annual cost per patient (reference year 2012) was euro24,520 in Hungary, euro25,993 in France, euro84,921 in Italy, euro94,384 in Spain, and euro209,420 in Germany. Costs are also shown to differ between children and adults. Direct costs accounted for most of the costs in all five countries (80, 100, 99, 98, and 93 %, respectively). CONCLUSIONS: MPS patients experience substantial loss of HRQOL and their families take a remarkable part in their care. Although utilization of health and social care resources varies significantly across countries, MPS incurs considerable societal costs in all the countries studied."," Eur J Health Econ 17 Suppl 1: 89-98.","Hungary,Spain,Italy,Bulgaria,UK,Germany,Sweden,France",2016,"Genetic",null,"Zarit","Children and Adolescents","Observational",null,"Hungary,Spain,Italy,Bulgaria,UK,Germany,Sweden,France","Children and Adolescents","Genetic",null,"Observational",null,"Zarit","2015:2018"]
[126,"Pham-Short, A., et al. (2016). \"Quality of Life in Type 1 Diabetes and Celiac Disease: Role of the Gluten-Free Diet.\" J Pediatr 179: 131-138.e131.",null,"Pham-Short, A., et al.","Quality of Life in Type 1 Diabetes and Celiac Disease: Role of the Gluten-Free Diet","OBJECTIVE: To evaluate quality of life (QoL) and glycemic control in youth with type 1 diabetes (T1D) and celiac disease vs T1D only. We hypothesized that QoL scores would be lower in youth with T1D and celiac disease and those nonadherent to the gluten-free diet (GFD). STUDY DESIGN: This case control study included 35 youth with T1D and 35 with T1D and celiac disease matched for age, sex, diabetes duration, and hemoglobin A1c level. QoL was assessed in participants and parents using the Pediatric Quality of Life Inventory Generic Core Scale, Pediatric Quality of Life Inventory Diabetes Module. and the General Well-Being Scale; youth with T1D and celiac disease also completed the celiac disease-specific DUX questionnaire and parents completed the Pediatric Quality of Life Inventory Family Impact Scale. Questionnaires were scored from 0 to 100; higher scores indicate better QoL or well-being. Scores were compared between T1D vs T1D with celiac disease, with subgroup analysis by GFD adherence vs nonadherence and therapy (continuous subcutaneous insulin infusion vs multiple daily injections). RESULTS: Youth with T1D and celiac disease reported similar generic and diabetes-specific QoL to T1D only. GFD nonadherent vs adherent youth reported lower diabetes-specific QoL (mean score 58 vs 75, P = .003) and lower general well-being (57 vs 76, P = .02), as did their parents (50 vs 72, P = .006), and hemoglobin A1c was higher (9.6% vs 8.0%, P = .02). Youth with T1D and celiac disease using continuous subcutaneous insulin infusion vs multiple daily injections had similar generic and diabetes-specific QoL and A1C (8.6 vs 8.2%, P = .44), but were less happy having to follow a lifelong diet (59 vs 29, P = .007). CONCLUSIONS: Youth with T1D and celiac disease who do not adhere to the GFD have lower QoL and worse glycemic control. Novel strategies are required to understand and improve adherence in those with both conditions."," J Pediatr 179: 131-138.e131.","Australia",2016,"Various,Diabetes",null,"PedsQL-FIM","Children and Adolescents","Observational",null,"Australia","Children and Adolescents","Various,Diabetes",null,"Observational",null,"PedsQL-FIM","2015:2018"]
[127,"Pillas, M., et al. (2016). \"Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers).\" Qual Life Res 25(1): 81-88.",null,"Pillas, M., et al.","Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers)","PURPOSE: Atypical parkinsonism (AP) has a considerable impact on the lives not only of patients but also of their carers. The aim of this study was to develop an instrument for assessing the quality of life (QoL) of carers of patients with AP. METHODS: A 40-item pool was generated from in-depth interviews with carers of patients with AP, a thorough review of the existing literature and consultation with movement disorder experts. Item refinement and reduction was performed using the results of pilot testing and a survey in 282 carers of multiple system atrophy (MSA) patients and 226 carers of progressive supranuclear palsy (PSP) patients. A validation study, with responses of 243 carers of MSA and 187 carers of PSP patients, was undertaken to evaluate the psychometric properties of the final 26-item scale. RESULTS: The validation study results suggest that the scale is unidimensional and has high internal consistency (Cronbach's alpha = 0.96). The correlations of scale scores with patients' health status and QoL measures, such as PDQ-39 summary score and EQ-5D index (Spearman's rho = 0.56 and -0.31, respectively, P < 0.001), as well as carers' measures, such as Caregiver Burden Inventory (CBI) total and EQ-5D index (Spearman's rho = 0.85 and -0.39, respectively, P < 0.001), document the convergent and concurrent validity of the scale. ANOVA results support the discriminant validity of the scale, as evidenced by its capacity to differentiate between carers with varying levels of self-reported health. CONCLUSIONS: The 26-item Parkinsonism Carers QoL (PQoL Carer) is a concise instrument with adequate psychometric qualities that can be used for clinical and research purposes."," Qual Life Res 25(1): 81-88.","UK,USA",2016,"Parkinson's",null,"CBI","Adults","Validation",null,"UK,USA","Adults","Parkinson's",null,"Validation",null,"CBI","2015:2018"]
[128,"Pritchard, C., et al. (2004). \"Comparison of cohorts of elective and emergency neurosurgical patients: psychosocial outcomes of acoustic neuroma and aneurysmal sub arachnoid hemorrhage patients and carers.\" Surg Neurol 62(1): 7-16.",null,"Pritchard, C., et al.","Comparison of cohorts of elective and emergency neurosurgical patients: psychosocial outcomes of acoustic neuroma and aneurysmal sub arachnoid hemorrhage patients and carers","OBJECTIVES: To compare the psychosocial outcomes of cohorts of elective [Acoustic Neuroma (AN)] and emergency [Aneu-rysmal Sub Arachnoid Hemorrhage (ASAH)] Neurosurgical patients and carers. METHODS: The standardized Wessex Patient Carer Questionnaire was designed with patients and carers and provided psychosocial and economic outcome data following elective or emergency surgery. Clinical data on size of tumor and size of bleed, respectively, were extracted from Consultant notes. RESULTS: Both cohorts were generally satisfied with neurosurgical in-patient care but both suffered high-economic costs and were predominately very dissatisfied with community care. There were significant psychosocial differences between elective and emergency patients, and despite greater relative physical disability among elective patients, it was the emergency cohort who had worse psychosocial outcomes. CONCLUSIONS: Despite many common psychosocial features, the differences between the cohorts were mainly psychological rather than physiological, because of greater 'post-traumatic-stress-reaction' in the emergency cohort, indicating the need for appropriate psychosocial care immediately after neurosurgery to reduce unnecessary distress and costs to patients, carers, and community."," Surg Neurol 62(1): 7-16.","UK",2004,"Neurology",null,"WPCQ","Unspecified","Observational",null,"UK","Unspecified","Neurology",null,"Observational",null,"WPCQ","2000:2004"]
[129,"Pritchard, C., et al. (2004). \"Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size.\" Clin Otolaryngol Allied Sci 29(4): 324-330.",null,"Pritchard, C., et al.","Psycho-socio-economic outcomes in acoustic neuroma patients and their carers related to tumour size","The objective was to explore psycho-socio-economic outcomes of a 2-year cohort of patients having surgery for an acoustic neuroma, and carers and their relationship to tumour size after surgery. The Wessex Patient Carer Questionnaire was designed in conjunction with Patients and Carers, to determine psycho-socio-economic outcomes. The results were juxtaposed against clinical profiles. The House-Brackman (HB) scale was used to assess facial function at 6 and 12 months after operation. The cohort contained 102 patients. There were 87% effective responders. Half were aged below 54 years and 30% had school-aged children. The majority (93%) of patients were operated via the translabyrinthine approach. Patients with large tumours, i.e. greater than 3 cm (28%), had most post-treatment physical problems, including hearing and balance difficulties, and 42% reported difficulty eating in public. Thirty-four per cent felt 'stressed' and 18%'depressed'. After 6 months, facial function was recorded as HB scale 5/6 in 21% of patients but by 1 year only 8% of patients were HB 5/6. Patients and carers were generally very satisfied with their in-patient neurosurgical care, but significantly dissatisfied with post-discharge care - particularly the shortcoming of the community services. The majority of families felt 'unsupported' and only 20% of patients had confidence in their General Practitioner's knowledge. Families faced severe socio-economic disruption and patients\"time-off-work' was estimated to cost pound 954,000. Carers carried considerable post-discharge psychological burdens and costs to the public purse were calculated to be pound 52,000."," Clin Otolaryngol Allied Sci 29(4): 324-330.","UK",2004,"Neurology",null,"WPCQ","Unspecified","Observational",null,"UK","Unspecified","Neurology",null,"Observational",null,"WPCQ","2000:2004"]
[130,"Rapp, T., et al. (2015). \"An Analysis of the Public Financial Support Eligibility Rule for French Dependent Elders with Alzheimer's Disease.\" Value Health 18(5): 553-559.",null,"Rapp, T., et al.","An Analysis of the Public Financial Support Eligibility Rule for French Dependent Elders with Alzheimer's Disease","BACKGROUND: It is crucial to define health policies that target patients with the highest needs. In France, public financial support is provided to dependent patients: it can be used to finance informal care time and nonmedical care use. Eligibility for public subsidies and reimbursement of costs is associated with a specific tool: the autonomie gerontologie groupes iso-ressources (AGGIR) scale score. OBJECTIVE: Our objective was to explore whether patients with Alzheimer's disease who are eligible for public financial support have greater needs than do noneligible patients. METHODS: Using data from the Dependance des patients atteints de la maladie d'Alzheimer en France study, we calculated nonmedical care expenditures (in euro) using microcosting methods and informal care time demand (hours/month) using the Resource Use in Dementia questionnaire. We measured the burden associated with informal care provision with Zarit Burden Interview. We used a modified two-part model to explore the correlation between public financial support eligibility and these three variables. RESULTS: We find evidence of higher informal care use, higher informal caregivers' burden, and higher care expenditures when patients have an AGGIR scale score corresponding to public financial support eligibility. CONCLUSIONS: The AGGIR scale is useful to target patients with the highest costs and needs. Given our results, public subsidies could be used to further sustain informal caregivers networks by financing programs dedicated to lowering informal caregivers' burden."," Value Health 18(5): 553-559.","France",2015,"Dementia",null,"Zarit","Older Persons","Observational",null,"France","Older Persons","Dementia",null,"Observational",null,"Zarit","2015:2018"]
[131,"Rebollo, P., et al. (2004). \"Different evaluations of the health related quality of life in dialysis patients.\" J Nephrol 17(6): 833-840.",null,"Rebollo, P., et al.","Different evaluations of the health related quality of life in dialysis patients","BACKGROUND: Sometimes patients on dialysis treatment cannot express their health-related quality of life (HRQoL); and therefore, it is necessary to use the assessment made by their carers. The purpose of this study was to evaluate the agreement between dialysis patients' HRQoL and the assessment made by their carers, and to investigate which variables were associated with the differences found. METHODS: Two hundred and twenty-two pairs of patients and carers were selected from 14 dialysis units. Patients' HRQoL was evaluated by the patients themselves and by their family carer (FAM), nurse (NUR) and physician (PH) using the Karnofsky scale (KS) and the EuroQOL5D (EQ5D) scale. Patients and their family carers answered the Medical Outcome Survey 36-Item Short Form Health Survey (SF-36), and the family carers answered the Zarit burden interview. Physicians scored the patients' comorbidity index and nurses evaluated the Barthel index (BI). RESULTS: The intraclass correlation coefficients (ICC) between the ratings provided by patients and their carers were: KS: 0.80(FAM), 0.76(NUR) and 0.62(PH); EQ5D: 0.42(FAM), 0.48(NUR) and 0.29(PH). The agreement between the EQ5D dimension scores varied from moderate for mobility and self-care to insignificant for pain and anxiety/depression. The variables associated to the size of the differences found were the Zarit burden interview score and the mental component score (MCS) (SF-36) of the carer, the physical component score (PCS) (SF-36), the BI score and patient comorbidity, and the physician's age and experience. CONCLUSIONS: Family carers and health care providers of dialysis patients are reasonably aware of the patient's level of function and well being and can be useful sources of proxy HRQoL information. Nevertheless, discrepancies can occur, depending in part on the different characteristics of patients and their caregivers."," J Nephrol 17(6): 833-840.","Spain",2004,"Renal",null,"Zarit","Unspecified","Observational",null,"Spain","Unspecified","Renal",null,"Observational",null,"Zarit","2000:2004"]
[132,"Reeves, M. J., et al. (2017). \"Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol.\" BMC Neurol 17(1): 115.",null,"Reeves, M. J., et al.","Improving transitions in acute stroke patients discharged to home: the Michigan stroke transitions trial (MISTT) protocol","BACKGROUND: For some stroke patients and caregivers, navigating the transition between hospital discharge and returning home is associated with substantial psychosocial and health-related challenges. Currently, no evidence-based standard of care exists that addresses the concerns of stroke patients and caregivers during the transition period. Objectives of the Michigan Stroke Transitions Trial (MISTT) are to test the impact of a social worker home-based case management program, as well as an online information and support resource, on patient and caregiver outcomes after returning home. METHODS: The Michigan Stroke Transitions Trial is a randomized, pragmatic, open (un-blinded), 3-group parallel designed superiority trial conducted in 3 Michigan hospitals. Eligible participants are adult acute stroke patients discharged home directly or within 4 weeks of being discharged to a rehabilitation facility. The patient's primary caregiver is also invited to participate. Patients are randomized on the day they return home using a randomized block design. Consented patients discharged to a rehabilitation facility who do not go home within 4 weeks are dropped from the study. The 2 study interventions begin within a week of returning home and conclude 3 months later. The 3-group design compares usual care to either a home-based social worker stroke case management (SWSCM) program, or a combination of the SWSCM program plus access to an online information and support resource (MISTT website). Outcomes data are collected at 7-days and 90-days by trained telephone interviewers. Primary patient outcomes include the PROMIS global 10 score (a generic Quality of Life scale), and the Patient Activation Measure (PAM). Caregiver outcomes include the Bakas Caregiving Outcomes Scale. Final analysis will be based on 214 randomized acute stroke patients. To accommodate subjects excluded due to prolonged rehabilitation stays, as well as those lost-to-follow-up, up to 315 patients will be consented. DISCUSSION: The MISTT study will determine if a home-based case management program designed around the needs and preferences of stroke patients and caregivers, alone or in combination with a patient-centered online information and support resource can improve stroke survivor and caregiver outcomes 3 months after returning home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02653170 (Protocol ID: 135457). Registered April 9, 2015."," BMC Neurol 17(1): 115.","USA",2017,"Stroke",null,"BCOS","Adults","Protocol",null,"USA","Adults","Stroke",null,"Protocol",null,"BCOS","2015:2018"]
[133,"Richters, A., et al. (2017). \"Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity.\" Alzheimers Res Ther 9(1): 26.",null,"Richters, A., et al.","Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity","BACKGROUND: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving. The aim of this study was to extend insight into psychometric properties of the perseverance time instrument, specifically the construct validity, responsiveness, and predictive validity, within the population of informal caregivers for PwD. METHODS: Data from two studies among informal caregivers of community-dwelling PwD in the Netherlands were used. The first study included 198 caregivers from a single region in the Netherlands and lasted 1 year. The second was a cross-sectional nationwide study with 166 caregivers for PwD. Questionnaires of both studies included questions regarding demographics and informal care, perseverance time, and other informal caregiver outcomes (Caregiver Strain Index, Self-rated Burden scale, Care-related Quality of Life instrument, and visual analogue scale health scores). Construct validity and responsiveness were assessed using a hypothesis-testing approach. The predictive validity of demographic characteristics and perseverance time for living situation after 1 year (living at home, institutionalized, or deceased) was assessed with multivariable multinomial regression. RESULTS: All but one of the hypotheses regarding construct validity were met. Three of five hypotheses regarding responsiveness were met. Perseverance time scores at baseline were associated with living situation after 1 year (p < 0.01), unlike age, sex, and relationship with PwD. Perseverance time strongly increased predictive power for living situation after 1 year (c-index between 0.671 and 0.775) in addition to demographic characteristics. CONCLUSIONS: This study supports previous findings regarding the construct validity of the perseverance time instrument and adds new evidence of good construct validity, responsiveness, and predictive validity. The predictive power of perseverance time scores for living situation exceeds the predictive power of other burden measures and indicates informal care as an important factor for maintaining the patient at home."," Alzheimers Res Ther 9(1): 26.","Netherlands",2017,"Dementia",null,"CSI,CQLI,SRB","Older Persons","Validation",null,"Netherlands","Older Persons","Dementia",null,"Validation",null,"CSI,CQLI,SRB","2015:2018"]
[134,"Rivera-Navarro, J., et al. (2003). \"Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study.\" Disabil Rehabil 25(18): 1057-1064.",null,"Rivera-Navarro, J., et al.","Informal caregiving in multiple sclerosis patients: data from the Madrid Demyelinating Disease Group study","PURPOSE: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. METHODS: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). RESULTS: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. CONCLUSIONS: In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden."," Disabil Rehabil 25(18): 1057-1064.","Spain",2003,"Multiple Sclerosis",null,"Zarit","Unspecified","Observational",null,"Spain","Unspecified","Multiple Sclerosis",null,"Observational",null,"Zarit","2000:2004"]
[135,"Rodriguez-Sanchez, E., et al. (2010). \"Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol.\" BMC Public Health 10: 559.",null,"Rodriguez-Sanchez, E., et al.","Effectiveness of an intervention in groups of family caregivers of dependent patients for their application in primary health centers. Study protocol","BACKGROUND: Although Primary Health Care (PHC) Teams are used to deal with prevention and treatment of sanitary problems in adults with chronic diseases, they usually have a lack of experience in development of psychotherapeutic interventions. However, these interventions are the ones that achieve better results to reduce symptomatology and improve emotional state of caregivers.The study aims to evaluate the effectiveness of an intervention of psychotherapy in improving the mental health and Quality of life of caregivers. This intervention is based on theoretical approaches to care adjusted to cognitive theory, in order to be applied in primary health care centres. METHODS/DESIGN: This is multicentre clinical trials study, randomized in two parallel groups, carry out in two PHC, Study population: 150 caregivers will be included by consecutive sampling and they will be randomized the half to experimental group and the other half to control group. They provide mostly all the assistance to care-dependent familiars receiving attention in PHC Centers. MEASUREMENTS: Each caregiver will be evaluated on a personal interview. The caregivers' assessment protocol: 1) Assessment of different socio-demographic related to care, and caregiver's personal situation. 2)Care-dependent individuals will also be assessed by Barthel Index and Pfeiffer Questionnaire (SPMSQ). 3)Change in caregivers will be the principal measure: family function (Family APGAR Questionnaire), burden short questionnaire (Short Zarit Burden Interview), quality of life (Ruiz & Baca: 1993 Questionnaire), the Duke-UNK Functional Social Support Questionnaire, the General Health Questionnaire-12, and changes in Dysfunctional Thoughts about caring. 4) Intervention implementation measures will also be assessed. INTERVENTION: A psychotherapeutic intervention will be 8 sessions of 90 minutes in groups. This intervention has been initially developed for family caregivers of patients with dementia. DISCUSSION: Psychotherapeutic interventions have been proved to obtain better results to reduce symptomatology and improve emotional state of caregivers. Moreover, this intervention has been proved to be effective in a different setting other than PHC, and was developed by professionals of Mental Health. If we found that this intervention is effective in PHC and with our professionals, it would be an important instrument to offer to caregivers of care-dependent patients. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT01177696."," BMC Public Health 10: 559.","Spain",2010,"Unspecified",null,"Zarit,FAQ,FSS","Older Persons","Protocol",null,"Spain","Older Persons","Unspecified",null,"Protocol",null,"Zarit,FAQ,FSS","2010:2014"]
[136,"Rosell-Murphy, M., et al. (2014). \"Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.\" BMC Fam Pract 15: 53.",null,"Rosell-Murphy, M., et al.","Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol","BACKGROUND: Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. METHODS/DESIGN: DESIGN: CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). STUDY AREA: Primary Health Care network (9 PHCTs). STUDY PARTICIPANTS: Primary informal caregivers of patients receiving home health care from participating PHCTs. SAMPLE: Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. INTERVENTION: a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. CONTROL: Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data, Goldberg Scale, Apgar family questionnaire, Holmes and Rahe Psychosocial Stress Scale, number of chronic diseases. b) Dependent patient: sociodemographic data, level of dependency (Barthel Index), cognitive impairment (Pfeiffer test). DISCUSSION: If the intervention intended to improve social and family support is effective in reducing the burden on primary informal caregivers of dependent patients, this model can be readily applied throughout usual PHCT clinical practice. TRIAL REGISTRATION: Clinical trials registrar: NCT02065427."," BMC Fam Pract 15: 53.","Spain",2014,"Unspecified",null,"Zarit,FAQ","Unspecified","Protocol",null,"Spain","Unspecified","Unspecified",null,"Protocol",null,"Zarit,FAQ","2010:2014"]
[137,"Sambrook, R., et al. (2004). \"Canadian Outcomes Study in Dementia: study methods and patient characteristics.\" Can J Psychiatry 49(7): 417-427.",null,"Sambrook, R., et al.","Canadian Outcomes Study in Dementia: study methods and patient characteristics","OBJECTIVE: To describe the methods and patient characteristics of the Canadian Outcomes Study in Dementia (COSID). METHODS: COSID is a 3-year prospective study of dementia patients living in the community at the time of study registration. We assessed patients' cognition, behaviour, and functioning every 6 months, using the Modified Mini-Mental State Examination (3MS), the Neuropsychiatric Inventory (NPI), and the Functional Autonomy Measurement System (SMAF), respectively. We assessed caregivers, using the Zarit Burden Interview (ZBI). Additional information included the Global Deterioration Scale (GDS), patients' driving status, and clinical information including family history, dementia type, concomitant medications, and comorbid conditions. From the patient or caregiver, we collected details of inpatient and outpatient resources used by the patient and (or) caregiver. RESULTS: We enrolled 766 patients from 31 Canadian sites. Overall mean age was 76.8 years, and mean age of onset was 73.1 years. Of the total patients, 98% were white, 54% were women, and 84% were diagnosed with Alzheimer's disease. Mean baseline 3MS was 66.5, NPI was 9.5, and SMAF was 18.30. Of these patients, 48% reported a GDS score of 3 (that is, moderate), 16% reported a GDS score of 4 (that is, moderately severe), and the remaining 36% reported a GDS score of 1 or 2 (that is, mild or very mild). At baseline, 83% of patients received cholinesterase inhibitors, 46% received nonsteroidal antiinflammatory drugs, 39% received vitamin E, and 25% received antidepressants. Adult day care and home help were the largest cost factors in this population, with mean monthly costs of $65 and $64, respectively. We found interesting differences in the resources used among geographic regions and care settings. CONCLUSIONS: COSID is already generating valuable information about treatment patterns, outcomes, and resource use in Canadian patients with dementia. As the data mature, it will be possible to build robust models on treatment effectiveness and costs of care."," Can J Psychiatry 49(7): 417-427.","Canada",2004,"Dementia",null,"Zarit","Older Persons","Observational",null,"Canada","Older Persons","Dementia",null,"Observational",null,"Zarit","2000:2004"]
[138,"Santos-Garcia, D., et al. (2016). \"COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), a global--clinical evaluations, serum biomarkers, genetic studies and neuroimaging--prospective, multicenter, non-interventional, long-term study on Parkinson's disease progression.\" BMC Neurol 16: 26.",null,"Santos-Garcia, D., et al.","COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), a global--clinical evaluations, serum biomarkers, genetic studies and neuroimaging--prospective, multicenter, non-interventional, long-term study on Parkinson's disease progression","BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative disorder causing motor and non-motor symptoms that can affect independence, social adjustment and the quality of life (QoL) of both patients and caregivers. Studies designed to find diagnostic and/or progression biomarkers of PD are needed. We describe here the study protocol of COPPADIS-2015 (COhort of Patients with PArkinson's DIsease in Spain, 2015), an integral PD project based on four aspects/concepts: 1) PD as a global disease (motor and non-motor symptoms); 2) QoL and caregiver issues; 3) Biomarkers; 4) Disease progression. METHODS/DESIGN: Observational, descriptive, non-interventional, 5-year follow-up, national (Spain), multicenter (45 centers from 15 autonomous communities), evaluation study. Specific goals: (1) detailed study (clinical evaluations, serum biomarkers, genetic studies and neuroimaging) of a population of PD patients from different areas of Spain, (2) comparison with a control group and (3) follow-up for 5 years. COPPADIS-2015 has been specifically designed to assess 17 proposed objectives. STUDY POPULATION: approximately 800 non-dementia PD patients, 600 principal caregivers and 400 control subjects. Study evaluations: (1) baseline includes motor assessment (e.g., Unified Parkinson's Disease Rating Scale part III), non-motor symptoms (e.g., Non-Motor Symptoms Scale), cognition (e.g., Parkinson's Disease Cognitive Rating Scale), mood and neuropsychiatric symptoms (e.g., Neuropsychiatric Inventory), disability, QoL (e.g., 39-item Parkinson's disease Quality of Life Questionnaire Summary-Index) and caregiver status (e.g., Zarit Caregiver Burden Inventory); (2) follow-up includes annual (patients) or biannual (caregivers and controls) evaluations. Serum biomarkers (S-100b protein, TNF-alpha, IL-1, IL-2, IL-6, vitamin B12, methylmalonic acid, homocysteine, uric acid, C-reactive protein, ferritin, iron) and brain MRI (volumetry, tractography and MTAi [Medial Temporal Atrophy Index]), at baseline and at the end of follow-up, and genetic studies (DNA and RNA) at baseline will be performed in a subgroup of subjects (300 PD patients and 100 control subjects). Study periods: (1) recruitment period, from November, 2015 to February, 2017 (basal assessment); (2) follow-up period, 5 years; (3) closing date of clinical follow-up, May, 2022. FUNDING: Public/Private. DISCUSSION: COPPADIS-2015 is a challenging initiative. This project will provide important information on the natural history of PD and the value of various biomarkers."," BMC Neurol 16: 26.","Spain",2016,"Parkinson's",null,"Zarit","Older Persons","Protocol",null,"Spain","Older Persons","Parkinson's",null,"Protocol",null,"Zarit","2015:2018"]
[139,"Sautter, J. M., et al. (2014). \"Caregiver experience during advanced chronic illness and last year of life.\" J Am Geriatr Soc 62(6): 1082-1090.",null,"Sautter, J. M., et al.","Caregiver experience during advanced chronic illness and last year of life","OBJECTIVES: To compare the prevalence and predictors of caregiver esteem and burden during two different stages of care recipients' illnesses-advanced chronic illness and the last year of life. DESIGN: Longitudinal, observational cohort study. SETTING: Community sample recruited from outpatient clinics at Duke University and Durham Veterans Affairs Medical Centers. PARTICIPANTS: Individuals with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n = 62) or end-of-life (EOL; n = 62) care recipient-caregiver dyads. MEASUREMENTS: Caregiver experience was measured monthly using the Caregiver Reaction Assessment, which includes caregiver esteem and four domains of burden: schedule, health, family, and finances. RESULTS: During chronic illness and at the end of life, high caregiver esteem was almost universal (95%); more than 25% of the sample reported health, family, and financial burden. Schedule burden was the most prevalent form of burden; EOL caregivers (58%) experienced it more frequently than chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over 1 year. Few factors were associated with burden. CONCLUSION: Caregiver experience is relatively stable over 1 year and similar in caregivers of individuals in the last year of life and those earlier in the course of chronic illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness."," J Am Geriatr Soc 62(6): 1082-1090.","USA",2014,"End of life",null,"CRA","Adults","Observational",null,"USA","Adults","End of life",null,"Observational",null,"CRA","2010:2014"]
[140,"Schneider, J. W., et al. (2001). \"Health-related quality of life and functional outcome measures for children with cerebral palsy.\" Dev Med Child Neurol 43(9): 601-608.",null,"Schneider, J. W., et al.","Health-related quality of life and functional outcome measures for children with cerebral palsy","The aim of this study was to examine measures of health-related quality of life (HRQL) in children with cerebral palsy (CP) by comparing scores of a generic HRQL measure, the Child Health Questionnaire (CHQ); a disease-specific HRQL measure for children with CP, the Caregiver Questionnaire (CQ); and a pediatric functional measure, the Wee-Functional Independence Measure (WeeFIM). Participants included 30 caregivers of children with CP. The caregivers' children were a mean age of 8 years 6 months (17 females, 13 males). The ethnic origin of the children was 18 African-American, 8 white, 3 Hispanic, and 1 Middle Eastern. Significant correlations were found between the CQ and WeeFIM total and subscale scores (r=0.388 to 0.641). There was no correlation between the CHQ and CQ total summary scores, but significant correlations were found between the CHQ subscales related to parent time and family cohesion and the CQ total and subscale scores (r=0.386 to 0.481). The lack of correlation between the CHQ and WeeFIM indicates HRQL and function are different constructs that cannot be inferred from each other. The fair relationship found between the CQ and WeeFIM suggests that the constructs measured in these two assessments overlap. The lack of correlation between the total summary scores of the CHQ and CQ suggests the CQ may be a more specific measure of HRQL for this population that reflects the impact of the child's condition on the caregiver."," Dev Med Child Neurol 43(9): 601-608.","USA",2001,"Neurology",null,"CgQ","Children and Adolescents","Validation",null,"USA","Children and Adolescents","Neurology",null,"Validation",null,"CgQ","2000:2004"]
[141,"Schneider, J., et al. (1999). \"EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden.\" Int J Geriatr Psychiatry 14(8): 651-661.",null,"Schneider, J., et al.","EUROCARE: a cross-national study of co-resident spouse carers for people with Alzheimer's disease: I--Factors associated with carer burden","BACKGROUND: The challenges presented by the increasing public health and social impact of caring for people with dementia have become clear in recent years. Previous research has identified that, while there are positive as well as negative elements to the caring role, carers are at high risk of mental health problems and that the comprehensive burden of caring has social, economic and health based elements. Co-resident carers, especially spouses, are of primary importance in maintaining people with dementia in their own homes in the community rather than in institutional settings which may be both more costly and have greater environmental poverty. There have, however, been few studies which have sought to investigate factors associated with carer burden and differences and similarities between countries. In this study we aimed to produce a cross-national profile of co-resident spouse carers across the European Community, with particular attention to: living arrangements; formal and informal support; service satisfaction; perceived burden; and psychological well-being. METHOD: Twenty co-resident spouse carers of people with NINCDS-ADRDA probable dementia, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview which included: sociodemographic data; data on health and social service use; the Carer Burden Inventory (CBI); the General Health Questionnaire-12 (GHQ-12); and open-ended qualitative questions about the experience of caring. RESULTS: Two hundred and eighty couples were recruited. There was marked variation in all variables of interest between countries, but there were consistently high ratings of carer burden (mean CBI scores between 28 and 52) and psychological distress (between 40% and 75% scoring 4 or more on the GHQ-12). Using multivariate analyses (generalized linear modelling) to estimate the individual associations of variables of interest with carer burden, controlling for the effects of all other variables in the model, the following results were obtained: 11.4% (p = 0.003) of the variance was accounted for by between-country variation; 4.9% (p < 0.001) by expressed financial dissatisfaction; 4.5% (p = 0.001) by lower carer age; 3.2% (p = 0.004) by difficulties with spouse behavioural deficits; and 2.0% (p = 0.024) by perceived negative social reactions. There was a low level of contact with support groups and Alzheimer's disease societies despite the samples having been of service contacts. CONCLUSIONS: This study confirms the high level of burden and mental distress in spouse carers for people with Alzheimer's disease in the European Community. It suggests that there are elements of burden which may vary by country but also elements which have a common effect in all. These data suggest avenues for the primary and secondary prevention of burden by addressing clinical issues (e.g. behavioural disturbance); public attitudes and education (e.g. negative social reactions); economic support for carers (e.g. financial dissatisfaction); and higher risk groups (e.g. younger spouse carers)."," Int J Geriatr Psychiatry 14(8): 651-661.","UK",1999,"Dementia",null,"CBI","Older Persons","Observational",null,"UK","Older Persons","Dementia",null,"Observational",null,"CBI","1995:1999"]
[142,"Shepperd, S., et al. (1998). \"Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: three month follow up of health outcomes.\" Bmj 316(7147): 1786-1791.",null,"Shepperd, S., et al.","Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: three month follow up of health outcomes","OBJECTIVES: To compare hospital at home care with inpatient hospital care in terms of patient outcomes. DESIGN: Randomised controlled trial with three month follow up. SETTING: District general hospital and catchment area of neighbouring community trust. SUBJECTS: Patients recovering from hip replacement (n=86), knee replacement (n=86), and hysterectomy (n=238); elderly medical patients (n=96); and patients with chronic obstructive airways disease (n=32). INTERVENTIONS: Hospital at home care or inpatient hospital care. MAIN OUTCOME MEASURES: Dartmouth COOP chart to measure patients' general health status; SF-36 to measure possible limitations in physical functioning of patients with hysterectomy; disease specific measures-chronic respiratory disease questionnaire, Barthel index for elderly medical patients, Oxford hip score, and Bristol knee score; hospital readmission and mortality data; carer strain index to measure burden on carers; patients' and carers' preferred form of care. RESULTS: At follow up, there were no major differences in outcome between hospital at home care and hospital care for any of the patient groups except that those recovering from hip replacement reported a significantly greater improvement in quality of life with hospital at home care (difference in change from baseline value 0.50, 95% confidence interval 0.13 to 0.88). Hospital at home did not seem suitable for patients recovering from a knee replacement, as 14 (30%) of patients allocated to hospital at home remained in hospital. Patients in all groups preferred hospital at home care except those with chronic obstructive airways disease. No differences were detected for carer burden. Carers of patients recovering from knee replacement preferred hospital at home care, while carers of patients recovering from a hysterectomy preferred hospital care. CONCLUSIONS: Few differences in outcome were detected. Thus, the cost of hospital at home compared with hospital care becomes a primary concern."," Bmj 316(7147): 1786-1791.","UK",1998,"Respiratory,Musculoskeletal,Frailty,Various",null,"CSI","Older Persons,Adults","RCT",null,"UK","Older Persons,Adults","Respiratory,Musculoskeletal,Frailty,Various",null,"RCT",null,"CSI","1995:1999"]
[143,"Shimoyama, S., et al. (2003). \"Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan.\" Perit Dial Int 23 Suppl 2: S200-205.",null,"Shimoyama, S., et al.","Health-related quality of life and caregiver burden among peritoneal dialysis patients and their family caregivers in Japan","OBJECTIVE: Recent studies have found that patients with chronic renal failure suffer from depression and other symptoms of decreased mental health. However, little is know about caregiver burden and mental health among patients' families. In the present study, we examined the relationship in Japan between peritoneal dialysis (PD) patients and caregivers with regard to health-related quality of life (HRQOL) and caregiver burden. METHOD: In March of 2002, we recruited 60 subjects--26 patients on continuous ambulatory peritoneal dialysis (CAPD), and 34 caregivers--from a PD patient support group in southern Japan. We used the Kidney Disease Quality of Life Short Form (KDQOL-SF) and the Medical Outcomes Study Short Form 36 (SF-36) to measure HRQOL. We used the Zarit Burden Interview (ZBI) to measure caregiver burden. Data was also collected on each patient's duration of illness, treatment modality, age, sex, and medical history. All data were collected by mail surveys. RESULTS: Mean age of the PD patients was 48.2; mean age of the caregivers was 46.6. Mean caregiver burden on the ZBI was 14.1, which is considerably lower than that reported among caregivers for patients with dementia or stroke. Caregivers and patients both rated their general health and vitality among the lowest of the eight dimensions on the KDQOL-SF. In addition, patients scored lower than a normative population in all dimensions and significantly lower than caregivers in the dimensions of role physical functioning, role emotional functioning, and social functioning. Compared to national normative data for their age group, caregivers scored substantially lower in general health, vitality, and mental health. CONCLUSIONS: Patients on CAPD are at risk for social role dysfunction, and their caregivers are at risk for decreased mental health. Further research is needed to identify interventions that can improve the HRQOL of CAPD patients and their family caregivers."," Perit Dial Int 23 Suppl 2: S200-205.","Japan",2003,"Renal",null,"Zarit","Adults","Observational",null,"Japan","Adults","Renal",null,"Observational",null,"Zarit","2000:2004"]
[144,"Sorrento, T. A., et al. (2007). \"A consultant pharmacist's role on a geriatric assessment service.\" Consult Pharm 22(11): 935-943.",null,"Sorrento, T. A., et al.","A consultant pharmacist's role on a geriatric assessment service","OBJECTIVE: This paper describes the role of a consultant pharmacist on a geriatric assessment service team. SETTING: The Geriatric Assessment Service (GAS) is part of an Independent Practice Association (IPA) in Rochester, New York. PRACTICE DESCRIPTION: The consultant pharmacist is responsible for the promotion of appropriate, cost-effective prescribing of drug therapy in physician offices affiliated with the IPA. PRACTICE INNOVATION: A team included a consultant pharmacist, social worker, and registered nurse with the objective of providing support to community physicians in the care of at-risk, frail, medically complex, community-dwelling adults 75 years of age or older. Assessments completed varied according to patient needs. Recommendations were made to the primary care provider based on the results of each patient assessment. MAIN OUTCOME MEASUREMENTS: Caregiver Strain Index, Drug Appropriateness Measure, Patient satisfaction, Physician satisfaction. RESULTS: Enrollment rate in the program rose from 19% in the first quarter to 63% in the fourth quarter. The Drug Appropriateness Measure on average improved to greater than 60% for patients enrolled. Member satisfaction averaged 90%. The Caregiver Strain Index showed an improvement of 28%. An observational comparison of GAS-enrolled patients to noninterventional patients showed a lower per-member, per-month cost change from 2005 to 2006. CONCLUSION: The GAS program provided assistance to primary care providers caring for community-dwelling, at-risk seniors, resulting in improved pharmaceutical care, reduction in caregiver strain, and positive patient satisfaction."," Consult Pharm 22(11): 935-943.","USA",2007,"Frailty",null,"CSI","Older Persons","Observational",null,"USA","Older Persons","Frailty",null,"Observational",null,"CSI","2005:2009"]
[145,"Sousa, M. F., et al. (2015). \"Awareness of disease is different for cognitive and functional aspects in mild Alzheimer's disease: a one-year observation study.\" J Alzheimers Dis 43(3): 905-913.",null,"Sousa, M. F., et al.","Awareness of disease is different for cognitive and functional aspects in mild Alzheimer's disease: a one-year observation study","Awareness of disease can be compromised to some degree in a proportion of people with dementia, with evident differences across domains. We designed this study to determine the factors associated with the impairment of awareness over a period of time. Using a longitudinal design, 69 people with mild Alzheimer's disease and their family caregivers completed the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, the Quality of Life in Alzheimer's Disease Scale, the Mini-Mental State Examination, the Clinical Dementia Rating Scale, the Cornell Scale for Depression in Dementia, the Pfeffer Functional Activities Questionnaire, the Neuropsychiatric Inventory, and the Zarit Burden Interview. Univariate and logistic regression analyses were conducted to examine the contribution of the various factors. The level of awareness of disease was significantly lower (p </= 0.001) between baseline and at follow up. At follow up, there was no change in the level of awareness of disease in 61.8%, whereas 25.4% worsened. However, the level of awareness improved in 12.3%. Logistic regression demonstrated that functional deficits (OR = 1.12, 95% CI: (1.03-1.22), p </= 0.01), and caregivers' quality of life (OR = 0.83, 95% CI: (0.70-0.98), p </= 0.05) were a significant predictor of impaired awareness of disease. The results confirmed that awareness and cognition are relatively independent, and showed that in people with mild dementia, unawareness is mainly manifested by poor recognition of changes in the activities of daily living, and decrease in quality of life."," J Alzheimers Dis 43(3): 905-913.","Brazil",2015,"Dementia",null,"Zarit","Older Persons","Observational",null,"Brazil","Older Persons","Dementia",null,"Observational",null,"Zarit","2015:2018"]
[146,"Stone, K. (2014). \"Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website.\" Rehabil Nurs 39(2): 76-85.",null,"Stone, K.","Enhancing preparedness and satisfaction of caregivers of patients discharged from an inpatient rehabilitation facility using an interactive website","PURPOSE: Research indicates a need for improved caregiver preparation to provide care following a patient's discharge from inpatient rehabilitation. The aim of this project was to test the use of web-based resources to enhance the preparedness and satisfaction of such caregivers. METHODS: A website was provided to caregivers with resources and e-mail access to a rehabilitation nurse practitioner. Care recipients had the following diagnoses: stroke, amputation, trauma/orthopedic, brain injury or debility. Preparedness for caregiving was assessed before utilization of the website and after discharge. Satisfaction of the resources was assessed after discharge. Measures included the Preparedness for Caregiver Scale and the Client Satisfaction Questionnaire. Seventy caregivers completed the predischarge preparedness tool. Thirty returned both tools postdischarge. FINDINGS: Analysis of pre-post test data indicated increased preparedness to provide care after resource use, no increase meeting the caregiver's personal needs, and satisfaction with the resources provided. The caregivers of brain-injured patients reported less preparation as caregivers than those who cared for patients with other diagnoses. Although high interest was reported in using e-mail with the nurse practitioner, the resource was not utilized. CLINICAL RELEVANCE: This preliminary study supports the clinical relevance of Internet resources to improve caregiver preparation. With shortened hospital stays, providing applicable and evidence-based websites and other online services for caregivers can complement other healthcare services. More research focused on preparing caregivers and supporting personal caregiver needs is needed to evaluate the impact on overall rehabilitation outcomes."," Rehabil Nurs 39(2): 76-85.","USA",2014,"Stroke",null,"PCS","Unspecified","Observational",null,"USA","Unspecified","Stroke",null,"Observational",null,"PCS","2010:2014"]
[147,"Suri, R. S., et al. (2011). \"Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials.\" Nephrol Dial Transplant 26(7): 2316-2322.",null,"Suri, R. S., et al.","Burden on caregivers as perceived by hemodialysis patients in the Frequent Hemodialysis Network (FHN) trials","BACKGROUND: Patients with end-stage renal disease often rely on unpaid caregivers to assist them with their daily living and medical needs. We characterized the degree to which patients enrolled in the Frequent Hemodialysis Network (FHN) trials perceived burden on their unpaid caregivers. METHODS: Participants completed the Cousineau Perceived Burden Scale, a 10-question scale previously developed in hemodialysis (HD) patients. Associations between baseline burden score and prespecified variables were evaluated using multivariable linear regression. RESULTS: Of 412 participants, 236 (57%) reported having unpaid caregivers. Compared to those without unpaid caregivers, these participants had greater comorbidity (Charlson mean 1.8 +/- 1.8 versus 1.2 +/- 1.7, P < 0.001), lower Short Form-36 (SF-36) Physical Health Composite (PHC) scores (median 33 versus 41, P < 0.001, higher Beck Depression scores (mean 16 +/- 11 versus 12 +/- 9, P < 0.001), and worse physical function. Median Cousineau score was 35 (interquartile range 20-53) (theoretical range 0-100). Over 50% felt their caregivers were overextended, yet 60% were confident that their caregivers could handle the demands of caring for them. Higher perceived burden was not associated with ability to be randomized. In adjusted analyses, Cousineau score was inversely associated with SF-36 PHC and Mental Health Composite scores and directly associated with Beck Depression score (each P < 0.001). CONCLUSIONS: Most HD patients in the FHN trials perceived substantial burden on their unpaid caregivers, and self-perceived burden was associated with worse depression and quality of life. Evaluation of the effects of frequent HD on perceived burden borne by caregivers in the FHN trials will help to establish the net benefits/determents of these intensive dialytic strategies."," Nephrol Dial Transplant 26(7): 2316-2322.","Canada",2011,"Renal",null,"CPBS","Unspecified","Observational",null,"Canada","Unspecified","Renal",null,"Observational",null,"CPBS","2010:2014"]
[148,"Tailor, V. K., et al. (2017). \"Quality of life and functional vision in children treated for cataract-a cross-sectional study.\" Eye (Lond) 31(6): 856-864.",null,"Tailor, V. K., et al.","Quality of life and functional vision in children treated for cataract-a cross-sectional study","PurposeChildren with cataract and their families face intensive medical and surgical management, with numerous hospital attendances, topical medications, and surgical procedures, as well as uncertainty about the child's future visual ability, education, and independence. Little is known about the impact on functional visual ability, vision-, and health-related quality of life (VR-, HR-QoL).Patients and methodsSeventy two children aged 2-16 years (mean 8.45, SD 4.1) treated for developmental or secondary cataract and their parents/carers completed three validated instruments measuring functional visual ability, VR-, and HR-QoL: the Cardiff Visual Ability Questionnaire for Children (CVAQC), Impact of Vision Impairment for Children (IVI-C), and PedsQL V 4.0.ResultsAll scores are markedly reduced: median (interquartile range (IQR)) CVAQC score -1.42 (-2.28 to -0.03), mean (SD) IVI-C score 65.67 (16.91), median (IQR) PedsQL family impact score 75 (56.94-88.19), parent report 71.74 (51.98-88.5), self-report 76.09 (61.96-89.13). Psychosocial PedsQL subscores are lower than physical subscores. Parent-completed tools (PedsQL family and parent report) state greater impact on HR-QoL than tools completed by children/young people, particularly in teenagers. Older children/young people have higher functional visual ability scores than younger children.ConclusionsCataract has a marked a long-term impact on functional visual ability and quality of life of children and young people, with HR-QoL affected to degrees reported in children with severe congenital cardiac defects or liver transplants."," Eye (Lond) 31(6): 856-864.","UK",2017,"Sensory",null,"PedsQL-FIM","Children and Adolescents","Observational",null,"UK","Children and Adolescents","Sensory",null,"Observational",null,"PedsQL-FIM","2015:2018"]
[149,"Taricco, M., et al. (2014). \"Impact of adapted physical activity and therapeutic patient education on functioning and quality of life in patients with postacute strokes.\" Neurorehabil Neural Repair 28(8): 719-728.",null,"Taricco, M., et al.","Impact of adapted physical activity and therapeutic patient education on functioning and quality of life in patients with postacute strokes","OBJECTIVE: The aim of this study was to assess whether the combination of Adapted Physical Activity (APA) and Therapeutic Patient Education (TPE) improves function and quality of life in survivors of strokes. METHODS: This nonrandomized controlled study enrolled patients with mild to moderate hemiparesis referred to 2 physical medicine and rehabilitation units in Emilia-Romagna, Italy, 3 to 18 months after a single unilateral mild to moderate stroke. The experimental group (n = 126) received 16 APA sessions and 3 sessions of TPE, and the control group (n = 103) received usual care; 86.9% completed treatment. The main outcome measure was a 4-month change in gait endurance (that corresponds to 2 months after intervention in the experimental group), and secondary outcomes included the Short Physical Performance Battery, Berg Balance Scale, Barthel Index, Geriatric Depression Scale, 12-item Short-Form Health Survey, and Caregiver Strain Index. Changes in scores at 4 months were compared between groups using analysis of variance and controlling for group imbalance by means of the propensity score. RESULTS: Gait endurance, physical performance, balance, and the physical component of the quality of life score increased significantly at 4 months in the APA group and remained stable in the control group. The propensity-adjusted between-group change was significant for these scores at P < .01. CONCLUSIONS: Our results confirm that it is feasible and potentially effective to implement APA programs for elderly patients with complex clinical conditions as early as 3 months after a stroke and suggest that, when combined with TPE, the effects of a postrehabilitation APA program are relatively enduring."," Neurorehabil Neural Repair 28(8): 719-728.","Italy",2014,"Stroke",null,"CSI","Older Persons","Observational",null,"Italy","Older Persons","Stroke",null,"Observational",null,"CSI","2010:2014"]
[150,"Teng, J., et al. (2003). \"Costs and caregiver consequences of early supported discharge for stroke patients.\" Stroke 34(2): 528-536.",null,"Teng, J., et al.","Costs and caregiver consequences of early supported discharge for stroke patients","BACKGROUND AND PURPOSE: Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care. METHODS: We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home. RESULTS: Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group. CONCLUSIONS: Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care."," Stroke 34(2): 528-536.","Canada",2003,"Stroke",null,"CBI","Adults","RCT",null,"Canada","Adults","Stroke",null,"RCT",null,"CBI","2000:2004"]
[151,"Thomson, W. M., et al. (2014). \"Comparison of the ECOHIS and short-form P-CPQ and FIS scales.\" Health Qual Life Outcomes 12: 36.",null,"Thomson, W. M., et al.","Comparison of the ECOHIS and short-form P-CPQ and FIS scales","BACKGROUND: The development of short-form versions of child oral-health-related quality of life (OHRQoL) scales has resulted in two closely related sets of measures. We set out to compare the properties and responsiveness of the Early Childhood Oral Health Impact Scale (ECOHIS--both \"child\" and \"family\" versions) and short-form Parental-Caregiver Perceptions Questionnaire (P-CPQ) and the Family Impact Scale (FIS) measures among New Zealand children with early childhood caries who underwent treatment under general anaesthesia (GA). METHODS: Secondary analysis of data from pretest/post-test clinical studies of consecutive clinical convenience samples undertaken in Wellington in 2005 and Auckland in 2010/11, with cross-sectional analyses using the former, and longitudinal analyses using the latter. RESULTS: Cronbach's alpha values for the ECOHIS-Child, P-CPQ-16 and P-CPQ-8 were 0.80, 0.88 and 0.80 respectively, and 0.83 and 0.68 (respectively) for the FIS-8 and the ECOHIS-Family. All scales showed acceptable cross-sectional construct validity, although that of the ECOHIS-Family was not as marked as that observed with the FIS-8. Responsiveness was acceptable, with the three child-focused measures showing similar effect sizes. The two family-focused measures were also similar. CONCLUSIONS: The ECOHIS-Child and the P-CPQ scales are very similar in their properties, but the ECOHIS-Family falls short of the FIS-8 in some important ways. The ECOHIS scales may be better deployed in epidemiological survey work rather than in health services research, whereas the P-CPQ-8, P-CPQ-16 and the FIS-8 seem to be well suited for the latter (particularly with children suffering from severe caries), but their epidemiological utility remains to be demonstrated."," Health Qual Life Outcomes 12: 36.","New Zealand",2014,"Oral Health",null,"FIS,P-CPQ","Children and Adolescents","Validation",null,"New Zealand","Children and Adolescents","Oral Health",null,"Validation",null,"FIS,P-CPQ","2010:2014"]
[152,"Toye, C., et al. (2015). \"Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital.\" BMC Geriatr 15: 70.",null,"Toye, C., et al.","Protocol for a randomised controlled trial of an outreach support program for family carers of older people discharged from hospital","BACKGROUND: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation. METHODS/DESIGN: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences. DISCUSSION: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support. TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 ."," BMC Geriatr 15: 70.","Australia",2015,"Frailty",null,"PCS","Older Persons","Protocol",null,"Australia","Older Persons","Frailty",null,"Protocol",null,"PCS","2015:2018"]
[153,"Turton, A. J., et al. (2013). \"Home-based reach-to-grasp training for people after stroke: study protocol for a feasibility randomized controlled trial.\" Trials 14: 109.",null,"Turton, A. J., et al.","Home-based reach-to-grasp training for people after stroke: study protocol for a feasibility randomized controlled trial","BACKGROUND: This feasibility study is intended to assess the acceptability of home-based task-specific reach-to-grasp (RTG) training for people with stroke, and to gather data to inform recruitment, retention, and sample size for a definitive randomized controlled trial. METHODS/DESIGN: This is to be a randomized controlled feasibility trial recruiting 50 individuals with upper-limb motor impairment after stroke. Participants will be recruited after discharge from hospital and up to 12 months post-stroke from hospital stroke services and community therapy-provider services. Participants will be assessed at baseline, and then electronically randomized and allocated to group by minimization, based on the time post-stroke and extent of upper-limb impairment. The intervention group will receive 14 training sessions, each 1 hour long, with a physiotherapist over 6 weeks and will be encouraged to practice independently for 1 hour/day to give a total of 56 hours of training time per participant. Participants allocated to the control group will receive arm therapy in accordance with usual care. Participants will be measured at 7 weeks post-randomization, and followed-up at 3 and 6 months post-randomization. Primary outcome measures for assessment of arm function are the Action Research Arm Test (ARAT) and Wolf Motor Function Test (WMFT). Secondary measures are the Motor Activity Log, Stroke Impact Scale, Carer Strain Index, and health and social care resource use. All assessments will be conducted by a trained assessor blinded to treatment allocation. Recruitment, adherence, withdrawals, adverse events (AEs), and completeness of data will be recorded and reported. DISCUSSION: This study will determine the acceptability of the intervention, the characteristics of the population recruited, recruitment and retention rates, descriptive statistics of outcomes, and incidence of AEs. It will provide the information needed for planning a definitive trial to test home-based RTG training. TRIAL REGISTRATION ISRCTN: ISRCTN56716589."," Trials 14: 109.","UK",2013,"Stroke",null,"CSI","Adults","Protocol",null,"UK","Adults","Stroke",null,"Protocol",null,"CSI","2010:2014"]
[154,"Unwin, G. and S. Deb (2014). \"Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties.\" Res Dev Disabil 35(10): 2329-2340.",null,"Unwin, G. and S. Deb","Caregiver's concerns-quality of life scale (CC-QoLS): development and evaluation of psychometric properties","We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test-retest reliability with an ICC of 0.81 for CC (range 0.46-0.83 across items) and 0.80 for QoL (range 0.65-0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31-0.63 across items) and 0.63 for QoL (range 0.31-0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman-Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r=0.4; p</=0.01 and QoL: r=-0.2; p</=0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r=0.5; p</=0.01 and QoL: r=-0.02; p</=0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties."," Res Dev Disabil 35(10): 2329-2340.","UK",2014,"Developmental",null,"CC-QOL,CUBS","Adults","Validation",null,"UK","Adults","Developmental",null,"Validation",null,"CC-QOL,CUBS","2010:2014"]
[155,"Utens, C. M., et al. (2014). \"Informal caregiver strain, preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: results of a randomised controlled trial.\" Int J Nurs Stud 51(8): 1093-1102.",null,"Utens, C. M., et al.","Informal caregiver strain, preference and satisfaction in hospital-at-home and usual hospital care for COPD exacerbations: results of a randomised controlled trial","BACKGROUND: Informal caregivers play an important role in hospital-at-home schemes. However they may increase their burden, especially chronic diseases, like COPD. In the absence of clear differences in effectiveness and cost-effectiveness between hospital-at-home and usual hospital care, informal caregiver preferences play an important role. This study investigated informal caregiver strain, satisfaction and preferences for place of treatment with a community-based hospital-at-homes scheme for COPD exacerbations. METHOD: The study was part of a larger randomised controlled trial. By randomisation, patients were allocated to usual hospital care or hospital-at-home, which included discharge at day 4 of admission, followed by home treatment with homes visits by community nurses until day 7 of treatment. Patients allocated to usual hospital care received care as usual in the hospital and were discharged at day 7. Patients were asked if they had an informal caregiver and who this was. Patients and their caregivers were followed for 90 days. Informal caregiver strain was assessed with the caregiver strain index. Satisfaction and preference were assessed using questionnaires. All measurements were performed at the end of the 7-day treatment and the end of the 90-days follow-up. FINDINGS: Of the 139 patients, 124 had an informal caregiver, of whom three-quarter was the patients' spouse. There was no significant difference in caregiver strain between hospital-at-home and usual hospital care at both time points (mean difference at T+4 days 0.47 95% CI -0.96 to 1.91, p=0.514; mean difference at T+90 days 0.36 95% CI -1.85 to 1.35, p=0.634). At the end of the 7-day treatment, 33% (N=15) of caregivers of patients allocated to hospital treatment and 71% (N=37) of caregivers of patients allocated to home treatment preferred home treatment, if they could choose. Caregivers were satisfied with the treatment the patient received within hospital-at-home. CONCLUSION: There were no differences in caregiver strain between the community-based hospital-at-home scheme and usual hospital care. Most caregivers were satisfied with the treatment. In addition to other outcomes, our results support the wider implementation of hospital-at-home for COPD exacerbations."," Int J Nurs Stud 51(8): 1093-1102.","Netherlands",2014,"Respiratory",null,"CSI","Adults","RCT",null,"Netherlands","Adults","Respiratory",null,"RCT",null,"CSI","2010:2014"]
[156,"van der Marck, M. A., et al. (2013). \"Effectiveness of multidisciplinary care for Parkinson's disease: a randomized, controlled trial.\" Mov Disord 28(5): 605-611.",null,"van der Marck, M. A., et al.","Effectiveness of multidisciplinary care for Parkinson's disease: a randomized, controlled trial","Multidisciplinary care is considered an optimal model to manage Parkinson's disease (PD), but supporting evidence is limited. We performed a randomized, controlled trial (RCT) to establish whether a multidisciplinary/specialist team offers better outcomes, compared to stand-alone care from a general neurologist. Patients with PD were randomly allocated to an intervention group (care from a movement disorders specialist, PD nurses, and social worker) or a control group (care from general neurologists). Both interventions lasted 8 months. Clinicians and researchers were blinded for group allocation. The primary outcome was the change in quality of life (Parkinson's Disease Questionnaire; PDQ-39) from baseline to 8 months. Other outcomes were the UPDRS, depression (Montgomery-Asberg Depression Scale; MADRS), psychosocial functioning (Scales for Outcomes in Parkinson's disease-Psychosocial; SCOPA-PS), and caregiver strain (Caregiver Strain Index; CSI). Group differences were analyzed using analysis of covariance adjusted for baseline values and presence of response fluctuations. A total of 122 patients were randomized and 100 completed the study (intervention, n = 51; control, n = 49). Compared to controls, the intervention group improved significantly on PDQ-39 (difference, 3.4; 95% confidence interval [CI]: 0.5-6.2) and UPDRS motor scores (4.1; 95% CI: 0.8-7.3). UPDRS total score (5.6; 95% CI: 0.9-10.3), MADRS (3.7; 95% CI: 1.4-5.9), and SCOPA-PS (2.1; 95% CI: 0.5-3.7) also improved significantly. This RCT gives credence to a multidisciplinary/specialist team approach. We interpret these positive findings cautiously because of the limitations in study design. Further research is required to assess teams involving additional disciplines and to evaluate cost-effectiveness of integrated approaches. (c) 2012 Movement Disorder Society."," Mov Disord 28(5): 605-611.","Netherlands",2013,"Parkinson's",null,"CSI","Adults","RCT",null,"Netherlands","Adults","Parkinson's",null,"RCT",null,"CSI","2010:2014"]
[157,"van Exel, N. J., et al. (2004). \"Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden.\" Clin Rehabil 18(2): 203-214.",null,"van Exel, N. J., et al.","Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden","OBJECTIVE: To compare the feasibility, convergent and clinical validity of three commonly used burden scales: Caregiver Strain Index (CSI), Caregiver Reaction Assessment (CRA) and Sense of Competence Questionnaire (SCQ), with a self-developed single question on self-rated burden (SRB). SUBJECTS: Stroke patients receiving support from an informal caregiver (n = 148) and their caregivers were followed up to six months after stroke. INTERVENTION: Feasibility was assessed with several measures of missing values. Convergent validity was assessed on the basis of the correlation patterns between the burden scales, and clinical validity through evaluation of expected associations between levels of burden and explanatory patients' and caregivers' characteristics. RESULTS: Missing values were less often observed on CSI and SRB than SCQ and CRA. Significant correlation coefficients (p < 0.05) could be demonstrated between all burden scales, except for one subscale of CRA. Evidence for clinical validity was strongest for CSI and SRB, based on associations between higher burden scores and patients' disability, and patients' and caregivers' poor level of health-related quality of life (all p < 0.05). CONCLUSIONS: A concise and simple measure would facilitate early detection of caregivers at risk in clinical practice and research. CSI and SRB are more feasible and at least as valid instruments for assessment of caregiver burden in stroke than the longer and more complex SCQ and CRA. SRB could be used for quick screening of caregivers at risk. CSI is indicated for further diagnosis of the burden of informal caregivers."," Clin Rehabil 18(2): 203-214.","Netherlands",2004,"Stroke",null,"CRA,CSI,SRB,SCQ","Adults","Validation",null,"Netherlands","Adults","Stroke",null,"Validation",null,"CRA,CSI,SRB,SCQ","2000:2004"]
[158,"van Groenestijn, A. C., et al. (2015). \"Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial.\" Amyotroph Lateral Scler Frontotemporal Degener 16(5-6): 309-315.",null,"van Groenestijn, A. C., et al.","Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial","Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality of life (QoL) in psychologically distressed patients with ALS and their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five to 10 CBT sessions plus usual care (UC) or UC alone. Outcome measures were SF-36 Mental Component Summary (MCS), ALSAQ-40 Emotional Functioning (EF), Hospital Anxiety and Depression Scale (HADS) and Caregiver Strain Index (CSI). Assessments took place at baseline, four, seven and 10 months. The steering committee decided to stop the trial prematurely and analyse the data due to: 1) slow recruitment (15 patients over 42 months); and 2) the low demand for joint patient-carer CBT sessions. Caregivers, however, expressed an unanticipated demand for individual psychological support. Patients' ALSAQ-40-EF and caregivers' SF-36-MCS were significantly better in CBT than UC (p < 0.05). CSI was significantly lower in the CBT than the UC (p < 0.05). In conclusion, CBT might be beneficial to patients and caregivers. The stringent eligibility criteria limited participation rate and consequently the generalizability of results. Future studies should further examine the impact of CBT interventions for patients with ALS and their caregivers."," Amyotroph Lateral Scler Frontotemporal Degener 16(5-6): 309-315.","Netherlands",2015,"ALS",null,"CSI","Unspecified","RCT",null,"Netherlands","Unspecified","ALS",null,"RCT",null,"CSI","2015:2018"]
[159,"Vieta, E., et al. (2011). \"Clinical management and burden of bipolar disorder: a multinational longitudinal study (WAVE-bd study).\" BMC Psychiatry 11: 58.",null,"Vieta, E., et al.","Clinical management and burden of bipolar disorder: a multinational longitudinal study (WAVE-bd study)","BACKGROUND: Studies in bipolar disorder (BD) to date are limited in their ability to provide a whole-disease perspective--their scope has generally been confined to a single disease phase and/or a specific treatment. Moreover, most clinical trials have focused on the manic phase of disease, and not on depression, which is associated with the greatest disease burden. There are few longitudinal studies covering both types of patients with BD (I and II) and the whole course of the disease, regardless of patients' symptomatology. Therefore, the Wide AmbispectiVE study of the clinical management and burden of Bipolar Disorder (WAVE-bd) (NCT01062607) aims to provide reliable information on the management of patients with BD in daily clinical practice. It also seeks to determine factors influencing clinical outcomes and resource use in relation to the management of BD. METHODS: WAVE-bd is a multinational, multicentre, non-interventional, longitudinal study. Approximately 3000 patients diagnosed with BD type I or II with at least one mood event in the preceding 12 months were recruited at centres in Austria, Belgium, Brazil, France, Germany, Portugal, Romania, Turkey, Ukraine and Venezuela. Site selection methodology aimed to provide a balanced cross-section of patients cared for by different types of providers of medical aid (e.g. academic hospitals, private practices) in each country. Target recruitment percentages were derived either from scientific publications or from expert panels in each participating country. The minimum follow-up period will be 12 months, with a maximum of 27 months, taking into account the retrospective and the prospective parts of the study. Data on demographics, diagnosis, medical history, clinical management, clinical and functional outcomes (CGI-BP and FAST scales), adherence to treatment (DAI-10 scale and Medication Possession Ratio), quality of life (EQ-5D scale), healthcare resources, and caregiver burden (BAS scale) will be collected. Descriptive analysis with common statistics will be performed. DISCUSSION: This study will provide detailed descriptions of the management of BD in different countries, particularly in terms of clinical outcomes and resources used. Thus, it should provide psychiatrists with reliable and up-to-date information about those factors associated with different management patterns of BD. TRIAL REGISTRATION NO: ClinicalTrials.gov: NCT01062607."," BMC Psychiatry 11: 58.","Austria,Belgium,Brazil,France,Germany,Portugal,Romania,Turkey,Ukraine,Venezuela",2011,"Psychiatric",null,"BAS","Unspecified","Protocol",null,"Austria,Belgium,Brazil,France,Germany,Portugal,Romania,Turkey,Ukraine,Venezuela","Unspecified","Psychiatric",null,"Protocol",null,"BAS","2010:2014"]
[160,"Vilalta-Franch, J., et al. (2013). \"Psychosis of Alzheimer disease: prevalence, incidence, persistence, risk factors, and mortality.\" Am J Geriatr Psychiatry 21(11): 1135-1143.",null,"Vilalta-Franch, J., et al.","Psychosis of Alzheimer disease: prevalence, incidence, persistence, risk factors, and mortality","OBJECTIVES: To establish the prevalence, incidence, persistence, risk factors, and mortality risk increase of psychosis of Alzheimer disease (PoAD) in a clinical sample. DESIGN, PARTICIPANTS, AND MEASUREMENTS: Cross-sectional, observational study of 491 patients with probable AD who, at baseline visit, were evaluated with the Cambridge Examination for Mental Disorders of the Elderly, the Neuropsychiatric Inventory-10, the Rapid Disability Rating Scale-2, and the Zarit Burden Interview. All participants were reevaluated at 6, 12, 18, and 24 months. PoAD diagnoses were made using specific criteria. RESULTS: PoAD prevalence was 7.3%, and the cumulative incidence at 6, 12, 18, and 24 months was 5.8%, 10.6%, 13.5%, and 15.1%, respectively. After 1 year, psychotic symptoms persisted in 68.7% of the patients with initial PoAD. At baseline, patients with PoAD scored lower in the Cambridge Cognitive Examination and Mini-Mental State Examination and higher in the Rapid Disability Rating Scale-2 and Zarit Burden Interview tests. Both low scores in the Cambridge Cognitive Examination subscale of learning memory (hazard ratio [HR] = 0.874; 95% CI: 0.788-0.969; Wald chi2 = 6.515; df = 1) and perception (HR = 0.743; 95% CI: 0.610-0.904; Wald chi2 = 8.778; df = 1), and high scores in expressive language (HR = 1.179; 95% CI: 1.024-1.358; Wald chi2 = 5.261; df = 1) and calculation skills (HR = 1.763; 95% CI: 1.067-2.913; Wald chi2 = 4.905; df = 1) were found to be associated with PoAD. PoAD leads to a faster functional impairment, and it increases mortality risk (HR = 2.191; 95% CI: 1.136-4.228; Wald chi2 = 5.471; df = 1) after controlling for age, gender, cognitive and functional disability, general health status, and antipsychotic treatment. CONCLUSIONS: PoAD seems to define a phenotype of AD of greater severity, with worsened functional progression and increased mortality risk."," Am J Geriatr Psychiatry 21(11): 1135-1143.","Spain",2013,"Dementia",null,"Zarit","Older Persons","Observational",null,"Spain","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[161,"Viwattanakulvanid, P., et al. (2014). \"The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions.\" J Neural Transm (Vienna) 121 Suppl 1: S15-24.",null,"Viwattanakulvanid, P., et al.","The impact of the nocturnal disabilities of Parkinson's disease on caregivers' burden: implications for interventions","Parkinson's disease (PD) imposes a burden on those who care for the person afflicted. The objective of this study was to assess and analyze the main determinants of caregivers' burden, especially the nocturnal manifestations of PD. This multi-center, national, cross-sectional study included 89 patient-caregiver pairs. Caregiver self-assessments were performed with Hospital Anxiety and Depression Scale (HADS) and Zarit Caregiver Burden Interview (ZCBI). Patient self-assessments were performed with Modified Parkinson's Disease Sleep Scale (MPDSS), Nocturnal Akinesia Dystonia and Cramp Score (NADCS), HADS and Parkinson's Disease Quality of Life Questionnaire (PDQ-8). Most of the caregivers were employed women, and the majority had been permanently taking care of the patient for 6.8 +/- 5.4 years. The study found that the ZCBI mean score of the caregivers significantly worsened as patients became more dependent (HY: 4-5, p = 0.036), and the mean ZCBI score of spousal caregivers (19.4; SD 15.5) was significantly higher than that of the offspring group (11.7; SD 7.9) (p = 0.008). Disease duration (r = 0.22), NADCS (r = 0.38), MPDSS (r = -0.36), PDQ-8 SI (r = 0.39) and HADS (total, anxiety and depression) scores (r = 0.46-0.49), and HADS (total, anxiety and depression scores (r = 0.37-0.52), had significant negative effect on caregivers' burden. Moderate association was found on MPDSS item 14 (r = 0.38) and NADCS akinesia score (r = 0.37). Patients' anxiety, nocturnal akinesia and the feeling of tiredness and sleepiness upon awakening in the morning were independent predictors of caregivers' burden (adjusted R2 = 0.46). Based on these findings, treatment of early mood symptoms of the patients and caregivers at risk may be helpful for the effective management of PD and it is also important to have well-designed psycho-educational and multicomponent interventions in the community for caregivers of persons with PD."," J Neural Transm (Vienna) 121 Suppl 1: S15-24.","Thailand",2014,"Parkinson's",null,"Zarit","Adults","Observational",null,"Thailand","Adults","Parkinson's",null,"Observational",null,"Zarit","2010:2014"]
[162,"Voisin, T., et al. (2010). \"Predictive factors of hospitalizations in Alzheimer's disease: a two-year prospective study in 686 patients of the REAL.FR study.\" J Nutr Health Aging 14(4): 288-291.",null,"Voisin, T., et al.","Predictive factors of hospitalizations in Alzheimer's disease: a two-year prospective study in 686 patients of the REAL.FR study","BACKGROUND: During the course of the Alzheimer's disease (AD), many patients need to be hospitalized either due to the direct consequences of the disease itself, or due to associated diseases or life event. The objective of the present study was to determine predictive factors for hospitalisation in AD patients. METHODS: Six hundred eighty-six AD patients from the French Network on AD (REAL-FR) were follow up and assessed every 6 months for 2 years. During follow-up, all events occurring between two visits, in particular hospital admissions were carefully recorded. RESULTS: Annual incidences for hospitalizations were 26.13% (95% CI, 22.52 to 29.74). After two years, 202 subjects were hospitalized for 296 hospitalizations. Three variables were found to be significant predictors of hospitalisations in the multivariate regression model: dependency for ADL (RR=0.81; 95% CI: 0.70-0.95, p=0.0091), the drug use (use of four or more drugs) (RR=1.83; 95% CI: 1.31-2.58, p=0.0005) and the NPI score (RR=1.011; 95% CI: 1.001-1.022, p=0.0427). For hospitalizations due to the direct consequences of the disease itself, three variables were found to be significant predictors of hospitalisations: dependency for ADL (RR=0.69; 95% CI: 0.53-0.88, p=0.0033), the caregiver burden Zarit score (RR=1.03; 95% CI: 1.01-1.05, p=0.0079) and the NPI score (RR=1.07; 95% CI: 1.03-1.12, p=0.0007). CONCLUSIONS: Intervention to support patients and caregivers to manage loss of ADL may be a practical approach to reduce hospitalisation. Prevention of drug use or optimal treatment of associated diseases in AD seem to be also a challenge to decrease the rates of hospitalization or readmission, and the costs of providing care."," J Nutr Health Aging 14(4): 288-291.","France",2010,"Dementia",null,"Zarit","Older Persons","Observational",null,"France","Older Persons","Dementia",null,"Observational",null,"Zarit","2010:2014"]
[163,"Wade, D. T., et al. (2003). \"Multidisciplinary rehabilitation for people with Parkinson's disease: a randomised controlled study.\" J Neurol Neurosurg Psychiatry 74(2): 158-162.",null,"Wade, D. T., et al.","Multidisciplinary rehabilitation for people with Parkinson's disease: a randomised controlled study","OBJECTIVE: To determine whether a programme of multidisciplinary rehabilitation and group support achieves sustained benefit for people with Parkinson's disease or their carers. METHODS: The study was a randomised controlled crossover trial comparing patients and carers who had received rehabilitation four months before assessment with those who had not. Patients were recruited from a neurology clinic, attended a day hospital from home weekly for six weeks using private car or hospital transport, and received group educational activities and individual rehabilitation from a multidisciplinary team. Patients were assessed at entry and at six months using a 25 item self assessment Parkinson's disease disability questionnaire, Euroqol-5d, SF-36, PDQ-39, hospital anxiety and depression scale, and timed stand-walk-sit test. Carers were assessed using the carer strain index and Euroqol-5d. RESULTS: 144 people with Parkinson's disease without severe cognitive losses and able to travel to hospital were registered (seven were duplicate registrations); 94 had assessments at baseline and six months. Repeated measures analysis of variance comparing patients at the 24 week crossover point showed that those receiving rehabilitation had a trend towards better stand-walk-sit score (p = 0.093) and worse general and mental health (p = 0.002, p = 0.019). Carers of treated patients had a trend towards more strain (p = 0.086). Analysis comparing patients before and six months after treatment showed worsening in disability, quality of life, and carer strain. CONCLUSIONS: Patients with Parkinson's disease decline significantly over six months, but a short spell of multidisciplinary rehabilitation may improve mobility. Follow up treatments may be needed to maintain any benefit."," J Neurol Neurosurg Psychiatry 74(2): 158-162.","UK",2003,"Parkinson's",null,"CSI","Adults","RCT",null,"UK","Adults","Parkinson's",null,"RCT",null,"CSI","2000:2004"]
[164,"Wijesinghe, C. J., et al. (2013). \"The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale.\" Ceylon Med J 58(4): 162-167.",null,"Wijesinghe, C. J., et al.","The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale","OBJECTIVES: To develop a valid and reliable instrument to assess caregiver burden in caregivers of children with cerebral palsy (CP). METHODS: A self-administered, multidimensional instrument--Caregiver Difficulties Scale (CDS)--was developed using a combined qualitative-quantitative approach. Items for the preliminary draft were selected from existing caregiver assessment instruments by consensus of experts or key informant interviews with caregivers and service providers of children with CP. Standard item reduction techniques based on responses of 50 caregivers were used to develop the 25 item final draft of CDS. Multidimensionality of CDS was established by exploratory factor analysis, using responses of 125 caregivers. Construct validity of CDS was confirmed by assessing correlations between CDS score and two other constructs: 'Caregiver quality of life' and 'Severity of disease in the care recipient' in a sample of 90 caregivers. Internal consistency and reliability of CDS were assessed using Cronbach's alpha and test/retest reliability. RESULTS: A new instrument (CDS) was developed with four subscales measuring caregiver's concerns for child, impact on self, support for caregiving and social and economic strain. Face validity, content validity and consensual validity of CDS was established through the process of item generation. Caregiver quality of life and severity of disease in care recipient demonstrated significant moderate to high correlations (r >/= 0.3) with scores of CDS, confirming construct validity. Both internal consistency and reliability of CDS were satisfactory. CONCLUSIONS: CDS is a valid and reliable instrument to assess caregiver burden among caregivers of children with cerebral palsy in Sri Lanka."," Ceylon Med J 58(4): 162-167.","Sri Lanka",2013,"Neurology",null,"CDfS","Children and Adolescents","Validation",null,"Sri Lanka","Children and Adolescents","Neurology",null,"Validation",null,"CDfS","2010:2014"]
[165,"Wilkinson, P. R., et al. (1997). \"A long-term follow-up of stroke patients.\" Stroke 28(3): 507-512.",null,"Wilkinson, P. R., et al.","A long-term follow-up of stroke patients","BACKGROUND AND PURPOSE: Two hundred ninety-one residents of southeast London, younger than 75 years, suffered their first stroke in 1989/1990. The objectives of this study were to determine the long-term outcome of this cohort of stroke patients in terms of impairment, disability, handicap, and quality of life and their use of services and prevention measures subsequent to their stroke. METHODS: The survivors and their identified caregivers were traced and completed a structured interview questionnaire that included the Barthel Index, modified Rankin Scale, Hospital Anxiety and Depression Scale (HAD), Mini-Mental State Examination, Frenchay Activities Index, and Caregiver Strain Index. RESULTS: One hundred twenty-three people (42%) were alive, of whom 106 were interviewed. The mean interval between the stroke and the long-term follow-up was 4.9 years. Thirty-one of the survivors (29%) were severely or moderately disabled, 39 (37%) were mildly disabled, and 36 (34%) were functionally independent. Of the 96 people who completed the HAD, 35 (36%) had scores suggesting that they were depressed or had borderline depression. The most likely nontherapy services to have been provided were chiropody and district nursing. Five people had received respite care. Of the 104 subjects for whom information about their home was available, 53 (51%) had had an adaptation. Seventy-five people (71%) had an aid or appliance. Sixty-five people (61%) were on aspirin, and an additional 14 (13%) were on warfarin. Fifty subjects (47%) identified a main caregiver. No one with a moderate or more severe disability was living at home without an identified caregiver. CONCLUSIONS: The levels of both health and social service provision are likely to be inadequate for this population. The use of prevention measures is encouraging. There is a clear need for a coordinated policy to guide assessment and management across sectors."," Stroke 28(3): 507-512.","UK",1997,"Stroke",null,"CSI","Adults","Observational",null,"UK","Adults","Stroke",null,"Observational",null,"CSI","1995:1999"]
[166,"Wilkinson, P. R., et al. (1997). \"Longer term quality of life and outcome in stroke patients: is the Barthel index alone an adequate measure of outcome?\" Qual Health Care 6(3): 125-130.",null,"Wilkinson, P. R., et al.","Longer term quality of life and outcome in stroke patients: is the Barthel index alone an adequate measure of outcome?","OBJECTIVES: To consider whether the Barthel Index alone provides sufficient information about the long term outcome of stroke. DESIGN: Cross sectional follow up study with a structured interview questionnaire and measures of impairment, disability, handicap, and general health. The scales used were the hospital anxiety and depression scale, mini mental state examination, Barthel index, modified Rankin scale, London handicap scale, Frenchay activities index, SF36, Nottingham health profile, life satisfaction index, and the caregiver strain index. SETTING: South east London. SUBJECTS: People, and their identified carers, resident in south east London in 1989-90 when they had their first in a life-time stroke aged under 75 years. INTERVENTIONS: Observational study. MAIN OUTCOME MEASURES: Comparison and correlation of the individual Barthel index scores with the scores on other outcome measures. RESULTS: One hundred and twenty three (42%) people were known to be alive, of whom 106 (86%) were interviewed. The median age was 71 years (range 34-79). The mean interval between the stroke and follow up was 4.9 years. The rank correlation coefficients between the Barthel and the different dimensions of the SF36 ranged from r = 0.217 (with the role emotional dimension) to r = 0.810 (with the physical functioning dimension); with the Nottingham health profile the range was r = -0.189 (with the sleep dimension, NS) to r = -0.840 (with the physical mobility dimension); with the hospital and anxiety scale depression component the coefficient was r = -0.563, with the life satisfaction index r = 0.361, with the London handicap scale r = 0.726 and with the Frenchay activities index r = 0.826. CONCLUSIONS: The place of the Barthel index as the standard outcome measure for populations of stroke patients is still justified for long term follow up, and may be a proxy for different outcome measures intended for the assessment of other domains."," Qual Health Care 6(3): 125-130.","UK",1997,"Stroke",null,"CSI","Adults","Validation",null,"UK","Adults","Stroke",null,"Validation",null,"CSI","1995:1999"]
[167,"Yu, D. S. (2016). \"Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial.\" J Am Geriatr Soc 64(10): 2144-2148.",null,"Yu, D. S.","Effects of a Health and Social Collaborative Case Management Model on Health Outcomes of Family Caregivers of Frail Older Adults: Preliminary Data from a Pilot Randomized Controlled Trial","Family caregiving is an important form of informal care provided to frail, community-dwelling older adults. This article describes a health and social collaborative case management (HSC-CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group-based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC-CM on caregiver burden and health-related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 +/- 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16-week HSC-CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC-CM. These case managers served as liaisons for multidisciplinary efforts to provide group-based education according to caregiver needs. Family caregivers who participated in the HSC-CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36-item Short-Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well-being (p = .049). This study provides preliminary evidence indicating that client-centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full-scale study is required to validate these findings."," J Am Geriatr Soc 64(10): 2144-2148.","China",2016,"Frailty",null,"CBI","Older Persons","RCT",null,"China","Older Persons","Frailty",null,"RCT",null,"CBI","2015:2018"]
[168,"Yun, Y. H., et al. (2005). \"Economic burdens and quality of life of family caregivers of cancer patients.\" Oncology 68(2-3): 107-114.",null,"Yun, Y. H., et al.","Economic burdens and quality of life of family caregivers of cancer patients","OBJECTIVES: We conducted this study to identify factors influencing the burdens cancer brings to a patient's family and to evaluate the association between the burdens and the caregiver's quality of life (QOL). METHODS: Participants were drawn from the primary family caregivers of cancer patients at 6 university hospitals and the National Cancer Center in Korea. Of the 738 eligible caregivers, 704 (95.4%) completed the questionnaire packets (Family Impact Questions and Caregiver's QOL-Cancer). RESULTS: Caregivers, who were poor (OR, 2.11; 95% CI, 1.44-3.10), whose health status was poor (OR, 1.87; 95% CI, 1.29-2.70), who were married (OR, 1.75; 95% CI, 1.12-2.72), who provided care for a long time (OR, 2.29; 95% CI, 1.59-3.28), who cared for patients with poor performance status (OR, 1.35; 95% CI, 1.00-1.82), and who paid high medical expenses (OR, 1.70; 95% CI, 1.21-2.40), were more likely to lose their family savings. In multiple regression analysis, most burden variables--including requiring caregiving assistance, major life change, inability to function normally, loss of savings, loss of income, and altered educational plans--were associated with caregiver QOL. Loss of family income, which was related to economic issues, was most strongly associated with it (16.0%). CONCLUSIONS: Our study suggests that to improve caregiver QOL, we should give priority to decreasing the economic burden that cancer places on patient's family."," Oncology 68(2-3): 107-114.","South Korea",2005,"Cancer",null,"FIS","Unspecified","Observational",null,"South Korea","Unspecified","Cancer",null,"Observational",null,"FIS","2005:2009"]
[169,"Zahid, M. A. and J. U. Ohaeri (2010). \"Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia.\" BMC Psychiatry 10: 71.",null,"Zahid, M. A. and J. U. Ohaeri","Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia","BACKGROUND: Although the burden experienced by families of people with schizophrenia has long been recognized as one of the most important consequences of the disorder, there are no reports from the Arab world. Following the example of the five-nation European (EPSILON) study, we explored the following research question: How does the relationship between domains of caregiving (as in the Involvement Evaluation Questionnaire--IEQ-EU) and caregiver psychic distress on the one hand, and caregiver's/patient's socio-demographics, clinical features and indices of quality of care, on the other hand, compare with the pattern in the literature? METHOD: Consecutive family caregivers of outpatients with schizophrenia were interviewed with the IEQ-EU. Patients were interviewed with measures of needs for care, service satisfaction, quality of life (QOL) and psychopathology. RESULTS: There were 121 caregivers (66.1% men, aged 39.8). The IEQ domain scores (total: 46.9; tension: 13.4; supervision: 7.9; worrying: 12.9; and urging: 16.4) were in the middle of the range for the EU data. In regression analyses, higher burden subscale scores were variously associated with caregiver lower level of education, patient's female gender and younger age, as well as patient's lower subjective QOL and needs for hospital care, and not involving the patient in outdoor activities. Disruptive behavior was the greatest determinant of global rating of burden. CONCLUSION: Our results indicate that, despite differences in service set-up and culture, the IEQ-EU can be used in Kuwait as it has been used in the western world, to describe the pattern of scores on the dimensions of caregiving. Differences with the international data reflect peculiarities of culture and type of service. Despite generous national social welfare provisions, experience of burden was the norm and was significantly associated with patient's disruptive behavior. The results underscore the need for provision of community-based programs and continued intervention with the families in order to improve the quality of care."," BMC Psychiatry 10: 71.","Kuwait",2010,"Psychiatric",null,"IEQ","Unspecified","Observational",null,"Kuwait","Unspecified","Psychiatric",null,"Observational",null,"IEQ","2010:2014"]

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[null,null,"Interventions",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null," "]
[null,null,"Diseases",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null," ",null," ",null,null," "]
[null,null,"PRO tools"]
[null,null,"Sub-populations"]
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[null,null,"Study methodologies"]
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[null,"Toggle age cut-offs",null,null,null,null,null,null,7,1,null,null,null,null,null,null,null,null,null,1,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"This year =",{"$f":"YEAR(NOW())","v":2018},null,"Years","Cut","Selected cut state","Start","End",{"$f":"COUNTA(CF3:CF58)","v":8},{"$f":"OFFSET($CI$2,0,domainChoice)","v":"Study methodologies"},"Locations","Interventions","Diseases","PRO tools","subPopulations","Study types","Study methodologies",null,null,null,null,"selected categories"]
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[null,"From",null,null,"To",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"C1","C1","Locations",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,{"$f":"OFFSET($BY$5,domainChoice,0)","v":"studymethodCategories"},"High year =",{"$f":"MAX(CG3:$CG$60)","v":2018},null,1961,false,null,1985,1989,{"$f":"IF(CF4<>\"\",_xlfn.CONCAT(CF4,\":\",CG4),\"\")","v":"1985:1989"},{"$f":"OFFSET($CJ$2,0,ROW()-3)","v":"Interventions"},"Australia",null,"Cancer","BAS","Children and Adolescents","Protocol",null,null,null,null,null,{"$f":"OFFSET(INDIRECT($CU$1),ROW()-3,0)","v":""}]
[null,{"$f":"IF(CF3=\"\",\"\",CF3)","v":1960},null,null,{"$f":"IF(CG3=\"\",\"\",CG3)","v":1984},null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"C2","C2","Interventions",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1962,false,"Segment count",1990,1994,"1990:1994","Diseases","Austria",null,"Cardiac","BCOS","Older Persons","RCT",null,null,null,null,null,""]
[null,{"$f":"IF(CF4=\"\",\"\",CF4)","v":1985},null,null,{"$f":"IF(CG4=\"\",\"\",CG4)","v":1989},null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"C3","C3","Diseases",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"locationCategories",null,null,null,1963,false,null,1995,1999,"1995:1999","PRO tools","Belgium",null,"Dementia","BIC","Unspecified","SLR",null,null,null,null,null,""]
[null,1990,null,null,1994,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"C4","C4","Sub-populations",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"interventionCategories",null,null,null,1964,false,null,2000,2004,"2000:2004","subPopulations","Brazil",null,"Developmental","CAS",null,"Validation",null,null,null,null,null,""]
[null,1995,null,null,1999,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"C5","C5","PRO tools",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"diseaseCategories",null,null,null,1965,false,null,2005,2009,"2005:2009","Study types","Bulgaria",null,"Diabetes","CB-RU",null,null,null,null,null,null,null,""]
[null,2000,null,null,2004,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Study types",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"protoolCategories",null,null,null,1966,false,null,2010,2014,"2010:2014","Study methodologies","Canada",null,"End of life","CBI",null,null,null,null,null,null,null,""]
[null,2005,null,null,2009,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Study methodologies",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"subpopulationCategories",null,null,null,1967,false,null,2015,2018,"2015:2018",null,"Chile",null,"Frailty","CBS",null,null,null,null,null,null,null,""]
[null,2010,null,null,2014,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Location categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"studytypeCategories",null,null,null,1968,false,null,null,null,"",null,"China",null,"Genetic","CC-QOL",null,null,null,null,null,null,null,""]
[null,{"$f":"IF(CF10=\"\",\"\",CF10)","v":2015},null,null,{"$f":"IF(CG10=\"\",\"\",CG10)","v":2018},null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Intervention categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"studymethodCategories",null,null,null,1969,false,null,null,null,"",null,"Cyprus",null,"Multiple Sclerosis","CCI",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Disease categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1970,false,null,null,null,"",null,"Europe",null,"Musculoskeletal","CCL",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Sub-populations categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1971,false,null,null,null,"",null,"France",null,"Neurology","CCSQ",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"PRO tool categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1972,false,null,null,null,"",null,"Germany",null,"Oral Health","CDS",null,null,null,null,null,null,null,""]
[null,"",null,null,{"$f":"IF(CG14=\"\",\"\",CG14)","v":""},null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Study type categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1973,false,null,null,null,"",null,"Greece",null,"Parkinson's","CDfS",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Study methodology categorised",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1974,false,null,null,null,"",{"$f":"COLUMN()","v":87},"Hungary",null,"Psychiatric","CES",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1975,false,null,null,null,"",null,"India",null,"Renal","CExS",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1976,false,null,null,null,"",null,"International",null,"Respiratory","CPBS",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1977,false,null,null,null,"",null,"Israel",null,"Sensory","CPC",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1978,false,null,null,null,"",null,"Italy",null,"Stroke","CQLI",null,null,null,null,null,null,null,""]
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[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1982,false,null,null,null,"",null,"Netherlands",null,null,"CUBS",null,null,null,null,null,null,null,""]
[null,"",null,null,"",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,1983,false,null,null,null,"",null,"New Zealand",null,null,"CarerQol",null,null,null,null,null,null,null,""]
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