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Inter-rater reliability of care home staff's proxy judgements with residents' assessment of their own health-related quality of life: an analysis of the PATCH trial EQ-5D data

Kelly, Charlotte; Hulme, Claire; Graham, Liz; Ellwood, Alison; Patel, Ismail; Cundill, Bonnie; Farrin, Amanda; Goodwin, Madeline; Hull, Karen; Fisher, Jill; Forster, Anne

Authors

Claire Hulme

Liz Graham

Alison Ellwood

Ismail Patel

Bonnie Cundill

Amanda Farrin

Madeline Goodwin

Karen Hull

Jill Fisher

Anne Forster



Abstract

Objectives
to compare care staff proxies with care home residents’ self-assessment of their health-related quality of life (HRQoL).

Methods
we assessed the degree of inter-rater reliability between residents and care staff proxies for the EQ-5D-5L index, domains and EQ Visual Analogue Scale at baseline, 3 months and 6 months, collected as part of the PATCH trial. We calculated kappa scores. Interpreted as 0.6 substantial to almost perfect agreement. Qualitative interviews with care staff and researchers explored the challenges of completing these questions.

Results
over 50% of the HRQoL data from residents was missing at baseline compared with a 100% completion rate by care staff proxies. A fair-to-moderate level of agreement was found for the EQ-5D-5L index. A higher level of agreement was achieved for the EQ-5D-5L domains of mobility and pain. Resident ‘non-completers’ were more likely to: be older, have stayed a longer duration in the care home, have lower Barthel Index and Physical Activity and Mobility in Residential Care (PAM-RC) scores, a greater number of co-morbidities and have joined the trial through consultee agreement. Interviews with staff and researchers indicated that it was easier to rate residents’ mobility levels than other domains, but in general it was difficult to obtain data from residents or to make an accurate proxy judgement for those with dementia.

Conclusions
whilst assessing HRQoL by care staff proxy completion provides a more complete dataset, uncertainty remains as to how representative these values are for different groups of residents within care homes.

Citation

Kelly, C., Hulme, C., Graham, L., Ellwood, A., Patel, I., Cundill, B., …Forster, A. (in press). Inter-rater reliability of care home staff's proxy judgements with residents' assessment of their own health-related quality of life: an analysis of the PATCH trial EQ-5D data. Age and ageing, https://doi.org/10.1093/ageing/afab053

Journal Article Type Article
Acceptance Date Dec 4, 2020
Online Publication Date Apr 5, 2021
Deposit Date Apr 5, 2021
Publicly Available Date Apr 6, 2021
Journal Age And Ageing
Print ISSN 0002-0729
Electronic ISSN 1468-2834
Publisher Oxford University Press (OUP)
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1093/ageing/afab053
Keywords Care homes; Care staff; Cost effectiveness; Health-related quality of life; Older people; Proxy measures
Public URL https://hull-repository.worktribe.com/output/3748835

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Publisher Licence URL
http://creativecommons.org/licenses/by-nc/4.0

Copyright Statement
© The Author(s) 2021. Published by Oxford University Press on behalf of the British Geriatrics Society. This is an Open Access article distributed under the terms of the Creative Commons AttributionNon-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/),which permitsnon-commercial re-use, distribution, and reproduction in any medium, provided the original work isproperly cited. For commercial re-use, please contact journals.permissions@oup.com





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