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

Abstract

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.

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

“…It is completed by direct care staff (mostly care aides), minimizing resident burden and cost to facilities and the system, and does not require external assessors. Although proxy reports of QoL are consistently lower than self-reports, 37 they measure the same construct as suggested by factor analyses. As noted above, DEMQOL-CH has advantages in long-term care where self-report is often impossible because of dementia severity and residents may not have a family or friend carer to provide proxy assessment.…”

“Not as Safe as I Believed”: Differences in Perceived and Self-Reported Cycling Behavior between Riders and Non-Riders

“…Conversely, we asked a sample of non-cyclists about the behavior they perceive in cyclists they have interacted with. There is some controversy on the use of proxies in different specific research areas such as healthcare, with some studies supporting their use [25][26][27] and others standing against [49]. Concerning road safety, family members and caregivers have been identified as reliable proxies [29,31,32].…”

Quality of life in older people with dementia: using nursing staff and family members as proxies

“…When individuals are no longer able to report on their own QoL, due to cognitive impairment, family and professional ratings are used as proxies. Proxy ratings, however, often differ from patients' selfreports and from each other depending on the setting and study population [9,10] and studies comparing self-assessed QoL and proxy-rated QoL often showed that individuals rated their QoL higher than proxy raters [11][12].…”

“…The limitations of our study are consistent with those of other papers in this area. Studies to investigate Qol in residents with dementia are usually cross-sectional and characterized by small sample sizes due to an old and multimorbid population [4,7,12]. When comparing the rater assessments for the same resident, more observations would have been desirable, and longitudinal data could have provided insight into the changes in the QoL of residents and the QoL assessments over time.…”