Swipe om te navigeren naar een ander artikel
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.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
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.
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.
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.
Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24(4), 653–659. PubMed
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. CrossRef
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. CrossRef
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. CrossRef
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. CrossRefPubMed
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.
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. CrossRefPubMedPubMedCentral
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. CrossRef
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. CrossRef
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. PubMed
Cohen, J., et al. (2013). Applied multiple regression/correlation analysis for the behavioral sciences. Abingdon: Routledge. CrossRef
StataCorp (2015). Stata statistical software: Release 14. College Station: StataCorp LP.
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. CrossRefPubMed
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. CrossRef
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.
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. CrossRef
Schermer, M. (2003). In search ofthe good life’for demented elderly. Medicine, Health Care and Philosophy, 6(1), 35–44. CrossRef
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. CrossRef
- Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments
Georgina M. Luscombe
Patricia M. Davidson
Constance D. Pond
- Springer International Publishing
- Quality of Life Research
An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation - Official Journal of the International Society of Quality of Life Research
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649