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05-09-2018

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

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

Gepubliceerd in: Quality of Life Research | Uitgave 1/2019

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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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Literatuur
1.
go back to reference 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. 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.
2.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference 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. 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.
5.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
6.
go back to reference 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. 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.
7.
go back to reference Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24(4), 653–659.PubMed Reisberg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24(4), 653–659.PubMed
8.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
9.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
10.
go back to reference Ettema, T. P., et al. (2005). A review of quality of life instruments used in dementia. Quality of Life Research, 14(3), 675–686.CrossRefPubMed Ettema, T. P., et al. (2005). A review of quality of life instruments used in dementia. Quality of Life Research, 14(3), 675–686.CrossRefPubMed
11.
go back to reference 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 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
12.
go back to reference Agar, M., et al. (2017). Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial. PLoS ONE, 12(8), e0181020.CrossRefPubMedPubMedCentral Agar, M., et al. (2017). Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial. PLoS ONE, 12(8), e0181020.CrossRefPubMedPubMedCentral
13.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
14.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
15.
go back to reference 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 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
16.
go back to reference 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 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
17.
go back to reference 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 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
18.
go back to reference 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. 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.
19.
go back to reference 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 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
20.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
21.
go back to reference 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 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
22.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
23.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
24.
go back to reference 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 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
25.
go back to reference Viney, R., et al. (2011). Time trade-off derived EQ-5D weights for Australia. Value in Health, 14(6), 928–936.CrossRefPubMed Viney, R., et al. (2011). Time trade-off derived EQ-5D weights for Australia. Value in Health, 14(6), 928–936.CrossRefPubMed
26.
go back to reference 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 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
27.
go back to reference Cohen, J., et al. (2013). Applied multiple regression/correlation analysis for the behavioral sciences. Abingdon: Routledge.CrossRef Cohen, J., et al. (2013). Applied multiple regression/correlation analysis for the behavioral sciences. Abingdon: Routledge.CrossRef
28.
go back to reference StataCorp (2015). Stata statistical software: Release 14. College Station: StataCorp LP. StataCorp (2015). Stata statistical software: Release 14. College Station: StataCorp LP.
29.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
30.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
31.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
32.
go back to reference 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 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
33.
go back to reference 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 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
34.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
35.
go back to reference 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. 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.
36.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
37.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
39.
go back to reference 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 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
40.
go back to reference Schermer, M. (2003). In search ofthe good life’for demented elderly. Medicine, Health Care and Philosophy, 6(1), 35–44.CrossRef Schermer, M. (2003). In search ofthe good life’for demented elderly. Medicine, Health Care and Philosophy, 6(1), 35–44.CrossRef
41.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
42.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
43.
go back to reference 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 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
44.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
45.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
Metagegevens
Titel
Health-related quality of life in people with advanced dementia: a comparison of EQ-5D-5L and QUALID instruments
Auteurs
Elizaveta Sopina
Lynn Chenoweth
Tim Luckett
Meera Agar
Georgina M. Luscombe
Patricia M. Davidson
Constance D. Pond
Jane Phillips
Stephen Goodall
Publicatiedatum
05-09-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 1/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-1987-0