Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study

Julie Ratcliffe (), Kiri Lay, Matthew Crocker, Lidia Engel, Rachel Milte, Claire Hutchinson, Jyoti Khadka, David G. T. Whitehurst, Brendan Mulhern, Rosalie Viney and Richard Norman
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Julie Ratcliffe: Flinders University
Kiri Lay: Flinders University
Matthew Crocker: Flinders University
Lidia Engel: Monash University
Rachel Milte: Flinders University
Claire Hutchinson: Flinders University
Jyoti Khadka: Flinders University
David G. T. Whitehurst: Simon Fraser University
Brendan Mulhern: University of Technology Sydney
Rosalie Viney: University of Technology Sydney
Richard Norman: Curtin University

The Patient: Patient-Centered Outcomes Research, 2024, vol. 17, issue 1, No 6, 53-64

Abstract: Abstract Objectives No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable. Methods Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to ‘think aloud’) format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades. Results Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade. Conclusions Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.

Date: 2024
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DOI: 10.1007/s40271-023-00655-6

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