Article

Quality of Life Research

, Volume 15, Issue 4, pp 631-643

First online:

Utility-based Quality of Life Measures in Alzheimer’s Disease

  • Gary NaglieAffiliated withDivision of General Internal Medicine and Clinical Epidemiology, University Health NetworkGeriatrics Program, Toronto Rehabilitation InstituteClinical Epidemiology and Health Care Research Program, University of TorontoDepartment of Medicine, University of TorontoDepartment of Health Policy, Management and Evaluation, University of Toronto Email author 
  • , George TomlinsonAffiliated withClinical Epidemiology and Health Care Research Program, University of TorontoDepartment of Medicine, University Health NetworkDepartment of Public Health Sciences, University of Toronto
  • , Catherine TanseyAffiliated withDepartment of Medicine, University Health NetworkInstitute of Medical Science, University of Toronto
  • , Jane IrvineAffiliated withDepartment of Psychology, York UniversityDepartment of Psychiatry, University of Toronto
  • , Paul RitvoAffiliated withDepartment of Psychology, York UniversityCancer Care OntarioOntario Cancer Institute
  • , Sandra E. BlackAffiliated withDepartment of Medicine, University of TorontoDivision of Neurology, Sunnybrook and Women’s College Health Sciences Centre
  • , Morris FreedmanAffiliated withDepartment of Medicine, University of TorontoDivision of Neurology, Mount Sinai HospitalBehavioural Neurology Program and Rotman Research Institute, Baycrest Centre for Geriatric CareDivision of Neurology, University Health Network
  • , Michel SilberfeldAffiliated withDepartment of Psychiatry, University of Toronto
  • , Murray KrahnAffiliated withDivision of General Internal Medicine and Clinical Epidemiology, University Health NetworkClinical Epidemiology and Health Care Research Program, University of TorontoDepartment of Medicine, University of TorontoDepartment of Health Policy, Management and Evaluation, University of Toronto

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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