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

Ratcliffe, J; Lay, K; Crocker, M; Engel, L; Milte, R; Hutchinson, C; Khadka, J; Whitehurst, DGT; Mulhern, B; Viney, R; Norman, R

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

Ratcliffe, J Lay, K Crocker, M Engel, L Milte, R Hutchinson, C Khadka, J Whitehurst, DGT Mulhern, B

Viney, R

Norman, R

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Publisher:: ADIS INT LTD
Publication Type:: Journal Article
Citation:: Patient, 2024, 17, (1), pp. 53-64
Issue Date:: 2024-01

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Field	Value	Language
dc.contributor.author	Ratcliffe, J
dc.contributor.author	Lay, K
dc.contributor.author	Crocker, M
dc.contributor.author	Engel, L
dc.contributor.author	Milte, R
dc.contributor.author	Hutchinson, C
dc.contributor.author	Khadka, J
dc.contributor.author	Whitehurst, DGT
dc.contributor.author	Mulhern, B https://orcid.org/0000-0003-3656-8063
dc.contributor.author	Viney, R https://orcid.org/0000-0002-0039-9635
dc.contributor.author	Norman, R
dc.date.accessioned	2024-09-24T01:15:07Z
dc.date.available	2023-10-12
dc.date.available	2024-09-24T01:15:07Z
dc.date.issued	2024-01
dc.identifier.citation	Patient, 2024, 17, (1), pp. 53-64
dc.identifier.issn	1178-1653
dc.identifier.issn	1178-1661
dc.identifier.uri	http://hdl.handle.net/10453/180935
dc.description.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.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	ADIS INT LTD
dc.relation.ispartof	Patient
dc.relation.isbasedon	10.1007/s40271-023-00655-6
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	11 Medical and Health Sciences
dc.subject.classification	32 Biomedical and clinical sciences
dc.subject.classification	42 Health sciences
dc.subject.mesh	Aged
dc.subject.mesh	Humans
dc.subject.mesh	Cognition
dc.subject.mesh	Quality of Life
dc.subject.mesh	Reproducibility of Results
dc.subject.mesh	Self Report
dc.subject.mesh	Humans
dc.subject.mesh	Reproducibility of Results
dc.subject.mesh	Cognition
dc.subject.mesh	Quality of Life
dc.subject.mesh	Aged
dc.subject.mesh	Self Report
dc.subject.mesh	Aged
dc.subject.mesh	Humans
dc.subject.mesh	Cognition
dc.subject.mesh	Quality of Life
dc.subject.mesh	Reproducibility of Results
dc.subject.mesh	Self Report
dc.title	Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study.
dc.type	Journal Article
utslib.citation.volume	17
utslib.location.activity	New Zealand
utslib.for	11 Medical and Health Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Strength - CHERE - Centre for Health Economics Research and Evaluation
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Research Centres/Centre for Health Economics Research and Evaluation
pubs.organisational-group	University of Technology Sydney/UTS Groups
pubs.organisational-group	University of Technology Sydney/UTS Groups/Centre for Health Economics Research and Evaluation (CHERE)
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Research Centres
utslib.copyright.status	closed_access	*
dc.date.updated	2024-09-24T01:15:04Z
pubs.issue	1
pubs.publication-status	Published
pubs.volume	17
utslib.citation.issue	1

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.

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http://hdl.handle.net/10453/180935