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Utility-based Quality of Life Measures in Alzheimer’s Disease
Authors:Gary Naglie  George Tomlinson  Catherine Tansey  Jane Irvine  Paul Ritvo  Sandra E Black  Morris Freedman  Michel Silberfeld  Murray Krahn
Institution:(1) Division of General Internal Medicine and Clinical Epidemiology, University Health Network, Toronto, Ontario, Canada;(2) Geriatrics Program, Toronto Rehabilitation Institute, 1008 – 550 University Avenue, Toronto, Ontario, M5G 2A2, Canada;(3) Clinical Epidemiology and Health Care Research Program, University of Toronto, Toronto, Ontario, Canada;(4) Department of Medicine, University of Toronto, Toronto, Ontario, Canada;(5) Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;(6) Department of Medicine, University Health Network, Toronto, Ontario, Canada;(7) Department of Public Health Sciences, University of Toronto, Toronto, Ontario, Canada;(8) Department of Psychology, York University, Toronto, Ontario, Canada;(9) Institute of Medical Science, University of Toronto, Toronto, Ontario, Canada;(10) Division of Neurology, Sunnybrook and Women’s College Health Sciences Centre, Toronto, Ontario, Canada;(11) Division of Neurology, Mount Sinai Hospital, Toronto, Ontario, Canada;(12) Behavioural Neurology Program and Rotman Research Institute, Baycrest Centre for Geriatric Care, Toronto, Ontario, Canada;(13) Cancer Care Ontario, Toronto, Ontario, Canada;(14) Ontario Cancer Institute, Toronto, Ontario, Canada;(15) Division of Neurology, University Health Network, Toronto, Ontario, Canada;(16) Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada
Abstract:Objectives: To explore whether Alzheimer’s disease patients could rate their quality of life (QOL) using utility-based health indexes, and to provide new knowledge about the measurement properties of these instruments for patient and caregiver proxy ratings. Methods: A convenience sample of 60 mild-moderate AD patients and their caregivers were randomized to complete the Quality of Well-Being Scale (QWB), Health Utilities Index (HUI3) or EQ-5D and visual analogue scale (VAS) on two occasions. Test–retest reliability (intraclass correlation coefficients) and convergent validity (Spearman correlations) of utility scores with global health status, activities of daily living, comorbidity, mood, cognition and other utility measures were assessed. Results: Completion time was shortest for the combined EQ-5D and VAS. For patients with mild dementia and for proxies, reliability was ≥ 0.70 for the EQ-5D, QWB and HUI3. The EQ-5D had a ceiling effect for patient ratings. Convergent validity was demonstrated for patient and proxy ratings, with the strongest validity for EQ-5D ratings and the weakest validity for HUI3 patient ratings. Mean patient utility scores were significantly higher than mean proxy scores for all measures (p<0.001). Conclusions: For patient and proxy ratings, the EQ-5D had the best combination of measurement properties, although it had a substantial ceiling effect for patient ratings. Proxy QOL ratings did not accurately reflect patients’ ratings.
Keywords:Alzheimers  Dementia  Quality of life  Utility measurement
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