Measuring health-related quality of life of care home residents: comparison of self-report with staff proxy responses

Abstract

Introduction care home residents are often unable to complete health-related quality of life questionnaires for themselves because of prevalent cognitive impairment. This study compared care home resident and staff proxy responses for two measures, the EQ-5D-5L and HowRU. Methods a prospective cohort study recruited residents ≥60 years across 24 care homes who were not receiving short stay, respite or terminal care. Resident and staff proxy EQ-5D-5L and HowRu responses were collected monthly for 3 months. Weighted kappa statistics and intra-class correlation coefficients (ICCs) adjusted for clustering at the care home level were used to measure agreement between resident and proxies for each time point. The effect of staff and resident baseline variables on agreement was considered using a multilevel mixed effect regression model. Results 117, 109 and 104 matched pairs completed the questionnaires at 1, 2 and 3 months, respectively. When clustering was controlled for, agreement between resident and staff proxy EQ-5D-5L responses was fair for mobility (ICC: 0.29) and slight for all other domains (ICC ≤ 0.20). EQ-5D Index and Quality-Adjusted Life Year scores (proxy scores higher than residents) showed better agreement than EQ-5D-VAS (residents scores higher than proxy). HowRU showed only slight agreement (ICC ≤ 0.20) between residents and proxies. Staff and resident characteristics did not influence level of agreement for either index. Discussion the levels of agreement for EQ-5D-5L and HowRU raise questions about their validity in this population.

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

“…Correlations between different measures across different reporters were generally weak to moderate, in line with recent similar studies [11,31]. This suggests that people living with dementia and those who support them do not perceive QoL in the same way, or that they may focus on different aspects of QoL, suggesting a need for several measures to be completed to ensure full coverage of perceived QoL.…”

“…It is well established that proxy raters assess QoL lower than self-rated QoL within dementia research [8], since these two groups may have different concepts of QoL [9]. Correlation between scores on QoL measures specifically designed for people with dementia are generally low-to-moderate between self-, staff-proxy and relative-proxy, suggesting poor agreement [10,11] and it is unclear who is the more accurate reporter [12]. The difference between proxy-and self-rated QoL is greater for individuals with higher levels of impaired cognition [10].…”

“…Despite the widespread use of various QoL measures in dementia research, there has been limited comparison between self-report and staff proxy measurements in people living with dementia in care homes, where proxy-reporting is often relied upon [17]. Generally, low agreement between self-reported and staff proxy-reported QoL has been found, with mean resident-reported scores on the EQ-5D-5L [11] and QOL-AD [18] higher than those of staff proxies. The current evidence base, however, provides limited evidence of how ratings vary between different proxy-reporters and different measures, or how measures capture changes in QoL over time.…”

Assessing the proxy response bias of EQ–5D-3 L in general population: a study based on a large-scale representative household health survey using propensity score matching

“…In China Guidelines for Pharmacoeconomic Evaluations, one of the most important HTA guidelines in China, EQ-5D is one of the four recommended preferred outcome for QoL [15]. To date, extensive studies have assessed the inter-rater reliability between self-report and proxy-report EQ-5D [16][17][18][19][20][21][22][23][24][25][26][27][28]. The inter-rater reliability is primarily measured using precision-the strength of agreement between proxy and patient responses, and bias-systematic difference in proxy response [29].…”

“…The inter-rater reliability is primarily measured using precision-the strength of agreement between proxy and patient responses, and bias-systematic difference in proxy response [29]. These existing studies primarily investigated the inter-rater reliability on specific population, such as children [19,27], older adults [24,27,28], dementia [16,18,21,[23][24][25], stroke [17], prolonged mechanical ventilation [20], intensive care [22], and vascular cognitive impairment [25]. In general, most of these studies showed that proxies were inclined to under-estimate the patients' health conditions, and proxy-reports and patient-reports did not agree and were inconsistent in terms of proxy type (e.g.…”