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Caregivers' assessments of preference-based quality of life in Alzheimer's disease
Affiliation:1. Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA;2. Division of Geriatrics, University of Pennsylvania, Philadelphia, PA, USA;3. Division of General Internal Medicine, University of Pennsylvania, Philadelphia, PA, USA;4. Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA, USA;5. Center for Bioethics, University of Pennsylvania, Philadelphia, PA, USA;6. Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA, USA;7. Alzheimer''s Disease Center, University of Pennsylvania, Philadelphia, PA, USA;8. Institute on Aging, University of Pennsylvania, Philadelphia, PA, USA;9. Global Health Outcomes Assessment, Wyeth Research, Madison, NJ, USA;10. School of Medicine, Washington University, St Louis, MO, USA;1. George Washington University School of Medicine, Washington, DC, USA;2. Department of Health Services and Seattle Quality of Life Group, University of Washington, Seattle, WA, USA;3. Janssen Research & Development, Ashton, MD, USA;4. Modus Outcomes, Newtown, MA, USA;5. Modus Outcomes, Letchworth Garden City, Hertfordshire, UK;6. Peninsula College of Medicine and Dentistry, Plymouth, UK;7. Institute of Medicine of the National Academy of Science, European Medicines Agency, London, UK;8. European Medicines Agency, London, UK;9. Aspen Consulting Services, LLC, Philadelphia, PA, USA;10. ISPOR, Lawrenceville, NJ, USA;11. Lora Group, LLC, Royal Oak, MD, USA;12. University of Maryland School of Pharmacy, Baltimore, MD, USA;1. Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada;2. Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada;3. Westpark Healthcare Centre, Toronto, ON, Canada;1. Department of Biostatistics, University of Liverpool, Liverpool, UK;2. Department of Epidemiology and Biostatistics, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands;3. Department of Health Policy, London School of Economics and Political Science, Cowdray House, London, UK;4. School of Public Health, University College Cork, Cork, Ireland;1. Student Research Committee, Shiraz University of Medical Sciences, Shiraz, Iran;2. Student Research Committee, Shiraz University of Medical Sciences, Shiraz, Iran;3. University of Adelaide, Adelaide, South Australia, Australia;4. Centre for Online Health, The University of Queensland, Brisbane, Australia;5. Health Human Recourses Research Center, School of Management and Medical Informatics, Shiraz University of Medical Sciences, Shiraz, Iran;1. Johns Hopkins Division of Rheumatology, 5200 Eastern Avenue, Mason F. Lord Bldg, Suite 4100, Baltimore, MD 21224, USA;2. Rick Hansen Institute, Blusson Spinal Cord Centre, 818 West 10th Avenue, Vancouver, British Columbia, Canada V5Z 1M9;3. Center for Interdisciplinary Research in Rehabilitation of Greater Montreal, CRLB, 2275 Laurier East, Montréal, Québec, Canada H2H 2N8;4. Direction de la Santé Publique, Montréal, 1301 Sherbrooke East, Montreal, Québec, Canada H2L 1M3;5. Department of Medicine, McGill University/McGill University Health Center (RVH), 687 Pine Avenue West, Ross Pavilion R4.29, Montreal, Québec, Canada H3A 1A1;6. School of Physical and Occupational Therapy, McGill University, 3654 Prom Sir-William-Osler, Montreal, Québec, Canada H3G 1Y5;7. Centre de recherche interdisciplinaire en réadaptation (CRIR), 2275 Laurier Ave E, Montreal, Quebec, Canada H2H 2N8;1. Department of Medical Informatics and Telemedicine, Medical University of Warsaw, Warsaw, Poland;2. Centre of Excellence “TeleOrto” for Telediagnostics and Treatment of Disorders and Injuries of the Locomotor System, Medical University of Warsaw, Warsaw, Poland;3. Department of Orthopaedics and Traumatology of the Locomotor System, Baby Jesus Clinical Hospital, Warsaw, Poland;4. Chair and Department of Orthopaedics and Traumatology of the Locomotor System, Medical University of Warsaw, Lindley’a 4, 02-005 Warsaw, Poland
Abstract:BackgroundThis study was designed to evaluate the feasibility, reliability, and validity of use of caregivers' ratings of two health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).MethodsCaregivers completed ratings of preference for AD patients' health by use of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2). They also rated patients' cognition, mood, burden, AD-specific and generic health-related quality of life (QOL), and activities of daily living.ResultsCaregivers' HUI2 scores were reliable. Neither the caregiver ratings of the patients' health by use of the EQ-5D nor the HUI2 had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with caregivers' assessments of patients' function, AD-specific QOL, and physical and mental health and selected subscales of the measures of AD-specific QOL and overall health. In addition, caregiver scores showed relationships with patient self-rated function, mood, and physical health but not AD-specific QOL. Caregiver burden was associated with caregivers' scores.ConclusionsCaregiver-completed ratings of preference for patients' health made by use of the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the lack of association with patient Mini-Mental Status Exam scores and patient self-rated AD-specific QOL and the associations with caregiver subjective burden might present limitations to their use as proxy measures for cost-effectiveness analyses.
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