Health‐related quality‐of‐life scales in Parkinson's disease: Critique and recommendations |
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| Authors: | Pablo Martinez‐Martin MD PhD Martine Jeukens‐Visser PhD Kelly E. Lyons PhD C. Rodriguez‐Blazquez BS Caroline Selai PhD Andrew Siderowf MD Mickie Welsh RN DNSC Werner Poewe MD Oliver Rascol MD Cristina Sampaio MD PhD Glenn T. Stebbins MD Christopher G. Goetz MD Anette Schrag FRCP PhD |
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| Affiliation: | 1. Alzheimer Disease Research Unit, CIEN Foundation–Reina Sofia Foundation, Alzheimer Center Reina Sofia Foundation, Carlos III Institute of Health, Madrid, Spain;2. National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain;3. Department of Rehabilitation, Academic Medical Center, Amsterdam, The Netherlands;4. University of Kansas Medical Center, Parkinson's Disease and Movement Disorder Center, Kansas City, Kansas, USA;5. Sobell Department of Motor Neuroscience & Movement Disorders, University College London, Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London, United Kingdom;6. Department of Neurology, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, USA;7. Division of Movement Disorders, USC/Keck School of Medicine, University of Southern California, Los Angeles, California, USA;8. Department of Neurology, University Hospital, Innsbruck, Austria;9. Laboratoire de Pharmacologie Medicale et Clinique, Toulouse, France;10. Laboratory of Clinical Pharmacology and Therapeutics, Lisbon School of Medicine, Lisbon, Portugal;11. Department of Neurological Services, Rush University Medical Center, Chicago, Illinois, USA;12. Department of Clinical Neurosciences, Royal Free Hospital, University College London, London, United Kingdom |
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| Abstract: | Health‐related quality of life is an important patient‐reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health‐related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health‐related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health‐related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives—use in Parkinson's disease, use by multiple research groups, and clinimetric properties—a final classification as “recommended,” “suggested,” or “listed” was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36‐Item Short‐Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39‐Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease–Psychosocial) reached the level of “recommended.” The 39‐item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are “suggested.” With a little additional effort in completing the stipulated requirements, they could reach the “recommended” level. At present there is a wide variety of health‐related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment. © 2011 Movement Disorder Society |
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| Keywords: | Parkinson's disease health‐related quality of life measures assessment patient‐reported outcomes |
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