Elizaveta Sopina1, Lynn Chenoweth2, Tim Luckett3, Meera Agar3,4, Georgina M Luscombe5, Patricia M Davidson6, Constance D Pond7, Jane Phillips3, Stephen Goodall8. 1. Department 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. 2. Centre for Healthy Brain Ageing, Faculty of Medicine, University of New South Wales, Sydney, Australia. 3. IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney (UTS), Sydney, Australia. 4. Ingham Institute for Applied Medical Research, 1 Campbell Street, Liverpool, 2164, UK. 5. School of Rural Health, University of Sydney, Orange, Australia. 6. Department of Acute and Chronic Care, School of Nursing, John Hopkins University, Baltimore, MD, USA. 7. Discipline of General Practice, University of Newcastle, Newcastle, Australia. 8. Centre for Health Economics Research and Evaluation, UUTS Business School, University of Technology Sydney, Sydney, Australia.
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.
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.
Authors: Rosalie Viney; Richard Norman; Madeleine T King; Paula Cronin; Deborah J Street; Stephanie Knox; Julie Ratcliffe Journal: Value Health Date: 2011-08-04 Impact factor: 5.725
Authors: Mohamed El Alili; Hanneke J A Smaling; Karlijn J Joling; Wilco P Achterberg; Anneke L Francke; Judith E Bosmans; Jenny T van der Steen Journal: BMC Health Serv Res Date: 2020-09-04 Impact factor: 2.655