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

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Abstract

Background

Assessing 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.

Methods

In 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.

Results

The 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.

Conclusion

Whilst 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.

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Funding

This study was funded by the Australian Department of Health (previously Department of Health and Ageing) (http://www.health.gov.au/).

Author information

Authors and Affiliations

  1. Department of Public Health, Danish Centre for Health Economics (DaCHE), University of Southern Denmark, J.B. Winsløws Vej 9B, 5000, Odense C, Denmark

    Elizaveta Sopina

  2. Centre for Healthy Brain Ageing, Faculty of Medicine, University of New South Wales, Sydney, Australia

    Lynn Chenoweth

  3. IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia

    Tim Luckett, Meera Agar & Jane Phillips

  4. Ingham Institute for Applied Medical Research, 1 Campbell Street, Liverpool, 2164, UK

    Meera Agar

  5. School of Rural Health, University of Sydney, Orange, Australia

    Georgina M. Luscombe

  6. Department of Acute and Chronic Care, School of Nursing, John Hopkins University, Baltimore, MD, USA

    Patricia M. Davidson

  7. Discipline of General Practice, University of Newcastle, Newcastle, Australia

    Constance D. Pond

  8. Centre for Health Economics Research and Evaluation, UUTS Business School, University of Technology Sydney, Sydney, Australia

    Stephen Goodall

Authors
  1. Elizaveta Sopina
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  2. Lynn Chenoweth
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Corresponding author

Correspondence to Elizaveta Sopina.

Ethics declarations

Conflict of interest

Elizaveta Sopina declares that she has no conflict of interest. Lynn Chenoweth declares that she has no conflict of interest. Tim Luckett declares that he has no conflict of interest. Meera Agar declares that she has no conflict of interest. Georgina M Luscombe declares that she has no conflict of interest. Patricia M. Davidson declares that she has no conflict of interest. Constance D Pond declares that she has been on an advisory committee on dementia for Elli-Lilly, has received speaker fees for speaking about dementia to Australian General Practitioners, Primary Health Networks and Alzheimer’s Australia, as well as airfares and accommodation to prepare educational material on dementia for General Practitioners. Jane Phillips declares that she has no conflict of interest. Stephen Goodall declares that he has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Human Research Ethics Committees of the University of NSW, University of Technology Sydney, Queensland University of Technology approved the trial. The trial was registered under trial ID no ACTRN12612001164886 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=362912.

Human and animal rights

This article does not contain any studies with animals performed by any of the authors.

Informed consent

Informed consent was obtained from family members with legal authority on behalf of all study participants.

Appendix

Appendix

See Fig. 1.

Fig. 1
figure 1

Correlation between changes in QUALID and changes in EQ5D over different follow-up time-points

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Sopina, E., Chenoweth, L., Luckett, T. et al. Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments. Qual Life Res 28, 121–129 (2019). https://doi.org/10.1007/s11136-018-1987-0

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  • DOI: https://doi.org/10.1007/s11136-018-1987-0

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