Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review

Abstract

Background EQ-5D is widely used for valuing changes in quality of life for economic evaluation of interventions for people with dementia. There are concerns about EQ-5D-3L in terms of content validity, poor inter-rater agreement and reliability in the presence of cognitive impairment, but there is also evidence to support its use with this population. An evidence gap remains regarding the psychometric properties of EQ-5D-5L. Objectives To report psychometric evidence around EQ-5D-5L in people with dementia. Methods A systematic review identified primary studies reporting psychometric properties of EQ-5D-5L in people with dementia. Searches were completed up to November 2020. Study selection, data extraction and quality assessment were undertaken independently by at least 2 researchers. Results Evidence was extracted from 20 articles from 14 unique studies covering a range of dementia severity. Evidence of known group validity from 5 of 7 studies indicated that EQ-5D-5L distinguishes severity of disease measured by cognitive impairment, depression, level of dependence and pain. Convergent validity (9 studies) showed statistically significant correlations of weak and moderate strengths, between EQ-5D-5L scores and scores on other key measures. Statistically significant change was observed in only one of 6 papers that allowed this property to be examined. All seven studies showed a lack of inter-rater reliability between self and proxy reports with the former reporting higher EQ-5D-5L scores than those provided by proxies. Five of ten studies found EQ-5D-5L to be acceptable, assessed by whether the measure could be completed by the PwD and/or by the amount of missing data. As dementia severity increased, the feasibility of self-completing EQ-5D-5L decreased. Three papers reported on ceiling effects, two found some evidence in support of ceiling effects, and one did not. Conclusions EQ-5D-5L seems to capture the health of people with dementia on the basis of known-group validity and convergent validity, but evidence is inconclusive regarding the responsiveness of EQ-5D-5L. As disease progresses, the ability to self-complete EQ-5D-5L is diminished.

Convergent validity of EQ-5D with core outcomes in dementia: a systematic review

“…Although these reviews highlight the value of EQ-5D in dementia research, both reviews broadly investigated psychometric properties, as opposed to specifically focusing on the convergent validity with dementia clinical trial outcomes, which is an important consideration as EQ-5D is increasingly used in dementia populations. A recent review (2022) broadly assessed the psychometric performance of EQ-5D in dementia populations, however it focused solely on EQ-5D-5L [ 9 ]. An earlier review (2011) [ 10 ] directly explored EQ-5D-3L as a QoL measure in people with dementia (PwD), investigating various psychometric properties including feasibility, reliability, responsiveness and validity.…”

Caregiver Burden and Quality of Life Across Alzheimer’s Disease Severity Stages

“…While the proxy rating is common in dementia research as a proportion of the population is unable to self-complete, the difference between self-reports and proxy reports is well-acknowledged (with self-reports generally resulting in higher utility values), and guidance on how to interpret these differences is lacking. 32 The findings could have several important implications. In line with family-centered care, this study highlights the importance of interventions targeted at alleviating the burden of caregivers.…”

“…Similarly, the study relied on proxy-rated EQ-5D-5L utility scores for PwADs. While the proxy rating is common in dementia research as a proportion of the population is unable to self-complete, the difference between self-reports and proxy reports is well-acknowledged (with self-reports generally resulting in higher utility values), and guidance on how to interpret these differences is lacking 32…”

Evaluating pain in survivors of critical illness: the correlation between the EQ-5D-5L and the Brief Pain Inventory

“…This may limit the utility of the BPI within this context. The single question assessing pain and discomfort in the EQ-5D-5L is inherently more simple and moreover this tool has been found to be acceptable for use by patients with cognitive impairment due to dementia 34. Further research in relation to the use of the BPI in the critical care cohort is required.…”

“…copyright.onFebruary 20, 2023 by guest. Protected by http://bmjopenrespres.bmj.com/ BMJ Open Resp Res: first published as 10.1136/bmjresp-2022-001426 on 18 January 2023.…”