A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study

O'Shea, Emma; Hopper, Louise; Marques, Maria J.; Gonçalves-Pereira, Manuel; Woods, Bob; Jelley, Hannah; Verhey, Frans R.J.; Kerpershoek, Liselot; Wolfs, Claire; Vugt, Marjolein de; Stephan, Astrid; Bieber, Anja; Meyer, Gabriele; Wimo, Anders; Michelet, Mona; Selbæk, Geir; Portolani, Elisa; Zanetti, Orazio; Irving, Kate

doi:10.1080/13607863.2018.1517727

Cited by 36 publications

(34 citation statements)

References 49 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Since it is a key predictor (indeed a component) of quality of life, the study of RQ allows us to better understand this broader and multifaceted construct. The complex determinants of quality of life were analysed in another Actifcare paper …”

Section: Discussionmentioning

confidence: 99%

Relationship quality and sense of coherence in dementia: Results of a European cohort study

Marques

Woods

Hopper

et al. 2019

Int J Geriat Psychiatry

View full text Add to dashboard Cite

Objective Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. Methods Cross‐sectional data were used from the Actifcare cohort study of 451 community‐dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). Results Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. Conclusions In this European sample, carer SOC was associated with carer‐reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.

show abstract

Section: Discussionmentioning

confidence: 99%

Relationship quality and sense of coherence in dementia: Results of a European cohort study

Marques

Woods

Hopper

et al. 2019

Int J Geriat Psychiatry

View full text Add to dashboard Cite

show abstract

“…Care receivers adhering to the specified criteria ("Appendix 1") and their informal carers were invited to complete the questionnaires, available in seven different languages. For all measures, including the ICECAP-O, nationally validated versions were used, or, if not available, the measure was translated, back translated and pilot tested following a translation protocol [21][22][23]. The data collection consisted of different parts.…”

Section: Methodsmentioning

confidence: 99%

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

et al. 2019

View full text Add to dashboard Cite

Purpose The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries. Methods Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project. Results The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time. Conclusion The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

show abstract

“…Future research should enhance recent reviews [37,41] and conduct a meta-analysis of different QoL measures completed by different raters over time, in order to establish which are most meaningful and suitable for use. One recent narrative review concluded that self-report and proxy-report DEMQOL and EQ-5D-5L should be used [15].…”

Section: Limitationsmentioning

confidence: 99%

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes

et al. 2019

View full text Add to dashboard Cite

Purpose There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self-and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings. Methods As part of a randomised controlled trial, four quality-of-life measures (DEMQOL, EQ-5D-5L, QOL-AD and QUALID) were completed by people living with dementia, their friends or relatives or care staff proxies. Data were collected from 726 people living with dementia living in 50 care homes within England. Analyses were conducted to establish the internal consistency of each measure, and inter-rater reliability and correlation between the measures. Results Residents rated their quality of life higher than both relatives and staff on the EQ-5D-5L. The magnitude of correlations varied greatly, with the strongest correlations between EQ-5D-5L relative proxy and staff proxy. Internal consistency varied greatly between measures, although they seemed to be stable across types of participants. There was poor-to-fair inter-rater reliability on all measures between the different raters. Discussion There are large differences in how QoL is rated by people living with dementia, their relatives and care staff. These inconsistencies need to be considered when selecting measures and reporters within dementia research.

show abstract

A comparison of self and proxy quality of life ratings for people with dementia and their carers: a European prospective cohort study

Cited by 36 publications

References 49 publications

Relationship quality and sense of coherence in dementia: Results of a European cohort study

Relationship quality and sense of coherence in dementia: Results of a European cohort study

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes

Contact Info

Product

Resources

About