Evidence map›Paper›PMID 38436803›Full record

ArticleJournal of patient-reported outcomes2024

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

Claire Hutchinson, Jyoti Khadka, Matthew Crocker, Kiri Lay, Rachel Milte, David Gt Whitehirst, Lidia Engel, Julie Ratcliffe

Abstract read
In one paragraph

Article in Journal of patient-reported outcomes, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Article
  4. Determining the quality of life-aged care consumer threshold to identify good quality of life in older adults in long-term care.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Claire HutchinsonCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia. claire.hutchinson@flinders.edu.au.ORCID 0000-0003-4289-8886
Jyoti KhadkaCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0003-1012-2119
Matthew CrockerCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0002-6207-7850
Kiri LayCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0003-1077-3771
Rachel MilteCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0001-7533-6260
David Gt WhitehirstFaculty of Health Sciences, Simon Fraser University, British Columbia, Burnaby, Canada.ORCID 0000-0002-7890-6756
Lidia EngelSchool of Public Health and Preventive Medicine, Monash University Health Economics Group, Monash University, Melbourne, VIC, Australia.ORCID 0000-0002-7959-3149
Julie RatcliffeCaring Futures Institute, College of Nursing and Health Science, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0001-7365-1988

Funding

Caring Futures Institute, Flinders University Caring Futures Institute, Flinders University
6 · The paper itself

Abstract

backgroundQuality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairment amongst older people, hence proxy reporting is often utilised as the default option. Internationally, there is little evidence on the impact of proxy perspective on interrater agreement between self and proxy report.

objectivesTo assess the impacts of (i) cognition level and (ii) proxy perspective on interrater agreement using a utility instrument, the Quality of Life-Aged Care Consumers (QOL-ACC).

methodsA cross-sectional study was undertaken with aged care residents and family member proxies. Residents completed the self-report QOL-ACC, while proxies completed two proxy versions: proxy-proxy perspective (their own opinion), and proxy-person perspective (how they believe the resident would respond). Interrater agreement was assessed using quadratic weighted kappas for dimension-level data and concordance correlation coefficients and Bland-Altman plots for utility scores.

resultsSixty-three residents (22, no cognitive impairment; 41, mild-to-moderate cognitive impairment) and proxies participated. In the full sample and in the mild-to-moderate impairment group, the mean self-reported QOL-ACC utility score was significantly higher than the means reported by proxies, regardless of perspective (p < 0.01). Agreement with self-reported QOL-ACC utility scores was higher when proxies adopted a proxy-person perspective.

conclusionRegardless of cognition level and proxy perspective, proxies tend to rate quality of life lower than residents. Further research is needed to explore the impact of such divergences for quality assessment and economic evaluation in aged care.

Indexed as

Advance DirectivesQuality of LifeAgedCognitionCross-Sectional StudiesHumansSelf ReportFamily membersLong-term careOlder adultsProxy assessmentQOL-ACCQuality indicatorsQuality of lifeResidential aged care

Identifiers

PMID38436803
PMCPMC10912388

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.