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ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019

Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments.

Elizaveta Sopina, Lynn Chenoweth, Tim Luckett, Meera Agar, Georgina M Luscombe, Patricia M Davidson, Constance D Pond, Jane Phillips, Stephen Goodall

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed, 3 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

12 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
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  8. The remarkably frequent use of EQ-5D in non-economic research.The European journal of health economics : HEPAC : health economics in prevention and care · 2022
    Article
  9. [Design and validation of a complex case evaluation index].Anales del sistema sanitario de Navarra · 2021
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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

9 authors.

Elizaveta SopinaDepartment of Public Health, Danish Centre for Health Economics (DaCHE), University of Southern Denmark, J.B. Winsløws Vej 9B, 5000, Odense C, Denmark. lsopina@health.sdu.dk.ORCID http://orcid.org/0000-0002-2680-6999
Lynn ChenowethCentre for Healthy Brain Ageing, Faculty of Medicine, University of New South Wales, Sydney, Australia.
Tim LuckettIMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia.
Meera AgarIMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia.
Georgina M LuscombeSchool of Rural Health, University of Sydney, Orange, Australia.
Patricia M DavidsonDepartment of Acute and Chronic Care, School of Nursing, John Hopkins University, Baltimore, MD, USA.
Constance D PondDiscipline of General Practice, University of Newcastle, Newcastle, Australia.
Jane PhillipsIMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia.
Stephen GoodallCentre for Health Economics Research and Evaluation, UUTS Business School, University of Technology Sydney, Sydney, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAssessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia.

methodsIn a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time.

resultsThe mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI - 0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r = - 0.437; p < 0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r = - 0.266; p = 0.005). The regression analyses support these findings.

conclusionWhilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care.

Indexed as

Aged, 80 and overDementiaFemaleHumansMalePsychometricsQuality of LifeSurveys and QuestionnairesAdvanced dementiaDementiaEQ-5D-5LHealth-related Quality of LifeProxyQALYQUALID

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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.