Quality of Life Research

, Volume 28, Issue 1, pp 121–129 | Cite as

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

  • Elizaveta SopinaEmail author
  • Lynn Chenoweth
  • Tim Luckett
  • Meera Agar
  • Georgina M. Luscombe
  • Patricia M. Davidson
  • Constance D. Pond
  • Jane Phillips
  • Stephen Goodall



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.


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.


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.


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.


Dementia Health-related Quality of Life QALY QUALID EQ-5D-5L Proxy Advanced dementia 



This study was funded by the Australian Department of Health (previously Department of Health and Ageing) (

Compliance with ethical standards

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

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.


  1. 1.
    de Wit, M., & Hajos, T. (2013). Health-related quality of life. In M. D. Gellman & J. R. Turner (Eds.), Encyclopedia of behavioral medicine (pp. 929–931). New York: Springer.Google Scholar
  2. 2.
    Chenoweth, L., et al. (2009). Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. The Lancet Neurology, 8(4), 317–325.CrossRefGoogle Scholar
  3. 3.
    Chenoweth, L., et al. (2014). PerCEN: A cluster randomized controlled trial of person-centered residential care and environment for people with dementia. International Psychogeriatrics, 26(7), 1147–1160.CrossRefGoogle Scholar
  4. 4.
    Smith, S., et al. (2005) Measurement of health-related quality of life for people with dementia: Development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment (Winchester, England). 9(10): 1–93.Google Scholar
  5. 5.
    Moyle, W., et al. (2015). Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach. BMC Geriatrics, 15(1), 50.CrossRefGoogle Scholar
  6. 6.
    Kind, P. (1996). The EuroQoL instrument: an index of health-related quality of life. Quality of Life and Pharmacoeconomics in Clinical Trials, 2, 191–201.Google Scholar
  7. 7.
    Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24(4), 653–659.Google Scholar
  8. 8.
    Tombaugh, T. N., & McIntyre, N. J. (1992). The mini-mental state examination: A comprehensive review. Journal of the American Geriatrics Society, 40(9), 922–935.CrossRefGoogle Scholar
  9. 9.
    Robertson, S., et al. (2017). Proxy rated quality of life of care home residents with dementia: a systematic review. International Psychogeriatrics, 29(4), 569–581.CrossRefGoogle Scholar
  10. 10.
    Ettema, T. P., et al. (2005). A review of quality of life instruments used in dementia. Quality of Life Research, 14(3), 675–686.CrossRefGoogle Scholar
  11. 11.
    Moniz-Cook, E., et al. (2008). A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging & Mental Health, 12(1), 14–29.CrossRefGoogle Scholar
  12. 12.
    Agar, M., et al. (2017). Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial. PLoS ONE, 12(8), e0181020.CrossRefGoogle Scholar
  13. 13.
    Herdman, M., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20(10), 1727–1736.CrossRefGoogle Scholar
  14. 14.
    Wolfs, C. A., et al. (2007). Performance of the EQ-5D and the EQ-5D + C in elderly patients with cognitive impairments. Health and Quality of Life Outcomes, 5(1), 33.CrossRefGoogle Scholar
  15. 15.
    Ready, R. E., (2011) Measuring quality of life in dementia. In C. Jenkinson (Ed.) Quality of Life measurement in neurodegenerative related conditions, (pp. 82–94), Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  16. 16.
    Bowling, A., et al. (2015). Quality of life in dementia: A systematically conducted narrative review of dementia-specific measurement scales. Aging & Mental Health, 19(1), 13–31.CrossRefGoogle Scholar
  17. 17.
    Banerjee, S., et al. (2009). What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. International Journal of Geriatric Psychiatry, 24(1), 15–24.CrossRefGoogle Scholar
  18. 18.
    Logsdon, R. G., et al. (1999). Quality of life in Alzheimer’s disease: Patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.Google Scholar
  19. 19.
    Agar, M., et al. (2015). Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: The IDEAL study protocol. BMC Palliative Care, 14(1), 63.CrossRefGoogle Scholar
  20. 20.
    Abernethy, A. P., Shelby-James, T., Fazekas, B. S., Woods, D., & Currow, D. C. (2005). The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice. BMC Palliative Care, 4(1), 7.CrossRefGoogle Scholar
  21. 21.
    Coventry, P. A., et al. (2005). Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: A systematic review. Age & Ageing, 34(3), 218–227.CrossRefGoogle Scholar
  22. 22.
    Volandes, A. E., et al. (2009). Video decision support tool for advance care planning in dementia: Randomised controlled trial. BMJ: British Medical Journal, 338, b2159.CrossRefGoogle Scholar
  23. 23.
    Candy, B., Jones, L., & Sampson, E. L. (2009). Enteral tube feeding in older people with advanced dementia: Findings from a Cochrane systematic review. International Journal of Palliative Nursing, 15(8), 396–404.CrossRefGoogle Scholar
  24. 24.
    Volicer, L., Hurley, A. C., & Blasi, Z. V. (2001). Scales for evaluation of end-of-life care in dementia. Alzheimer Disease & Associated Disorders. 15(4): 194–200.CrossRefGoogle Scholar
  25. 25.
    Viney, R., et al. (2011). Time trade-off derived EQ-5D weights for Australia. Value in Health, 14(6), 928–936.CrossRefGoogle Scholar
  26. 26.
    Weiner, M. F., et al. (2000). The quality of life in late-stage dementia (QUALID) scale. Journal of the American Medical Directors Association, 1(3), 114–116.Google Scholar
  27. 27.
    Cohen, J., et al. (2013). Applied multiple regression/correlation analysis for the behavioral sciences. Abingdon: Routledge.CrossRefGoogle Scholar
  28. 28.
    StataCorp (2015). Stata statistical software: Release 14. College Station: StataCorp LP.Google Scholar
  29. 29.
    Brazier, J. E., et al. (2010). A review of studies mapping (or cross walking) non-preference based measures of health to generic preference-based measures. The European Journal of Health Economics, 11(2), 215–225.CrossRefGoogle Scholar
  30. 30.
    Kunz, S. (2010). Psychometric properties of the EQ-5D in a study of people with mild to moderate dementia. Quality of Life Research, 19(3), 425–434.CrossRefGoogle Scholar
  31. 31.
    Aguirre, E., et al. (2016). How does the EQ-5D perform when measuring quality of life in dementia against two other dementia-specific outcome measures? Quality of Life Research, 25(1), 45–49.CrossRefGoogle Scholar
  32. 32.
    Rokstad, A. M. M., et al. (2013). The effect of person-centred dementia care to prevent agitation and other neuropsychiatric symptoms and enhance quality of life in nursing home patients: A 10-month randomized controlled trial. Dementia and Geriatric Cognitive Disorders, 36(5–6), 340–353.CrossRefGoogle Scholar
  33. 33.
    Sheehan, B. D., et al. (2012). Patient and proxy measurement of quality of life among general hospital in-patients with dementia. Aging & Mental Health, 16(5), 603–607.CrossRefGoogle Scholar
  34. 34.
    Chua, K.-C., et al. (2016). Quality-of-life assessment in dementia: The use of DEMQOL and DEMQOL-Proxy total scores. Quality of Life Research, 25(12), 3107–3118.CrossRefGoogle Scholar
  35. 35.
    Sopina, E., et al. (2017). Cost-effectiveness of a randomised trial of physical activity in Alzheimer’s disease: A secondary analysis exploring patient and proxy-reported health-related quality of life measures in Denmark. British Medical Journal Open, 7(6), e015217.Google Scholar
  36. 36.
    Bhattacharya, S., et al. (2010). Generic and disease-specific measures of quality of life in patients with mild Alzheimer’s disease. Dementia and Geriatric Cognitive Disorders, 30(4), 327–333.CrossRefGoogle Scholar
  37. 37.
    Hounsome, N., Orrell, M., & Edwards, R. T. (2011). EQ-5D as a quality of life measure in people with dementia and their carers: Evidence and key issues. Value in Health, 14(2), 390–399.CrossRefGoogle Scholar
  38. 38.
    Arons, A. M., et al. (2013). Quality of life in dementia: A study on proxy bias. BMC Medical Research Methodology, 13(1), 110.CrossRefGoogle Scholar
  39. 39.
    Meyer, J., et al. (2006). Moving from victim blaming to an appreciative inquiry: Exploring quality of life in care homes. Quality in Ageing and Older Adults, 7(4), 27–36.CrossRefGoogle Scholar
  40. 40.
    Schermer, M. (2003). In search ofthe good life’for demented elderly. Medicine, Health Care and Philosophy, 6(1), 35–44.CrossRefGoogle Scholar
  41. 41.
    Koo, T. K., & Li, M. Y. (2016). A guideline of selecting and reporting intraclass correlation coefficients for reliability research. Journal of Chiropractic Medicine, 15(2), 155–163.CrossRefGoogle Scholar
  42. 42.
    Rowen, D., et al. (2012). Estimating preference-based single index measures for dementia using DEMQOL and DEMQOL-proxy. Value in Health, 15(2), 346–356.CrossRefGoogle Scholar
  43. 43.
    Ratcliffe, J., et al. (2016) An empirical comparison of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U in a post-hospitalisation population of frail older people living in residential aged care. Applied Health Economics and Health Policy, 15(3): 399–412.CrossRefGoogle Scholar
  44. 44.
    Clare, L., et al. (2014). Care staff and family member perspectives on quality of life in people with very severe dementia in long-term care: A cross-sectional study. Health and Quality of Life Outcomes, 12(1), 175.CrossRefGoogle Scholar
  45. 45.
    Falk, H., Persson, L.-O., & Wijk, H. (2007). A psychometric evaluation of a Swedish version of the Quality of Life in Late-Stage Dementia (QUALID) scale. International Psychogeriatrics, 19(6), 1040–1050.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  • Elizaveta Sopina
    • 1
    Email author
  • Lynn Chenoweth
    • 2
  • Tim Luckett
    • 3
  • Meera Agar
    • 3
    • 4
  • Georgina M. Luscombe
    • 5
  • Patricia M. Davidson
    • 6
  • Constance D. Pond
    • 7
  • Jane Phillips
    • 3
  • Stephen Goodall
    • 8
  1. 1.Department of Public Health, Danish Centre for Health Economics (DaCHE)University of Southern DenmarkOdense CDenmark
  2. 2.Centre for Healthy Brain Ageing, Faculty of MedicineUniversity of New South WalesSydneyAustralia
  3. 3.IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of HealthUniversity of Technology Sydney (UTS)SydneyAustralia
  4. 4.Ingham Institute for Applied Medical ResearchLiverpoolUK
  5. 5.School of Rural HealthUniversity of SydneyOrangeAustralia
  6. 6.Department of Acute and Chronic Care, School of NursingJohn Hopkins UniversityBaltimoreUSA
  7. 7.Discipline of General PracticeUniversity of NewcastleNewcastleAustralia
  8. 8.Centre for Health Economics Research and EvaluationUUTS Business School, University of Technology SydneySydneyAustralia

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