How do older adults receiving aged care services understand and respond to the EQ-5D-5L? A think-aloud study in residential care

Abstract

Purpose The EQ-5D-5L is a preference-based instrument for measuring and valuing health-related quality of life (HRQoL). The EQ-5D-5L has been used extensively in economic evaluation, including in aged care. However, older adults’ understanding of the EQ-5D-5L has not been comprehensively investigated to date. This research aimed to assess older adults’ understanding of the EQ-5D-5L using a think-aloud protocol with two cognition groups: no cognitive impairment and mild/moderate cognitive impairment. Methods Participants’ cognition was assessed using the Standardised Mini-Mental State Examination (SMMSE). Face-to face interviews were conducted with concurrent and retrospective think-aloud encouraged through verbal probing. Audio recordings were transcribed, and qualitative analysis, informed by the Tourangeau four-stage Response Model (comprehension, retrieval, decision process, response process) was conducted in NVivo. Results In total, 46 older adults (age 65 +) were recruited from 10 residential care facilities across South Australia (n = 25 no cognitive impairment, n = 21 mild/moderate cognitive impairment). Comprehension, retrieval, judgement and response mapping issues were common across all cognition levels and EQ-5D-5L dimensions. The two dimensions resulting in the most response issues were usual activities and personal care. Conclusion Older adults may bring a different understanding to the EQ-5D-5L descriptive system than that expected given testing with general population samples. Dimension descriptors that are more relevant to this population may facilitate responses that better align with the underlying EQ-5D-5L concept model.

Examining interrater agreement between self-report and proxy-report responses for the quality of life-aged care consumers (QOL-ACC) instrument

“…This evidence suggests that more residents should be able to self-report using the QOL-ACC than when using other quality of life instruments typically used with this population. For example, a think aloud study using the EQ-5D-5 L identified substantial issues in older adults understanding of the items and response categories [ 44 ] More research is needed on a larger sample to confirm these initial QOL-ACC findings to support providers choice and justification of self or proxy report for residents with cognitive impairment.…”

Discrepancies between self‐ and proxy‐rated quality of life in people living with dementia

“…Lay et al. 40 stated that older adults with and without cognitive impairments reported the most response issues of the EQ‐5D‐5L in usual activities and self‐care, which may be interpreted as less appropriate in that sample. A further study concluded, that people consider their ability to do housework and leisure to be most closely related to usual activities, which indicates a wide range of interpretation.…”

“… 45 Further, the raters could differ in their comprehension and interpretation of the questionnaire items, affecting the responses and supporting disagreements. 40 , 41 …”

“…The different response behavior may also be caused by differences in the interpretation of the EQ-5D-5L's dimensions. Lay et al 40 stated that older adults with and without cognitive impairments reported the most response issues of the EQ-5D-5L in usual activities and selfcare, which may be interpreted as less appropriate in that sample.…”

“…45 Further, the raters could differ in their comprehension and interpretation of the questionnaire items, affecting the responses and supporting disagreements. 40,41 F I G U R E 2 Density plots of EuroQol 5 Dimension 5 Level (EQ-5D-5L) dimensions and indices, grouped by severity of health. Note.…”