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

• DOI: 10.1007/s11136-019-02333-3
• Publication Date: 2019-10-23T17:10:46Z
• Authors: Alys W. Griffiths; Sarah J. Smith; Adam Martin; David Meads; Rachael Kelley; Claire A. Surr
• Keywords: Proxy (statistics); Inter-Rater Reliability

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