title: Health-related quality-of-life scales in Parkinson's disease: critique and recommendations.
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.
authors: Alzheimer Disease Research Unit, CIEN Foundation-Reina Sofia Foundation, Alzheimer Center Reina Sofia Foundation, Carlos III Institute of Health, Madrid, Spain. pmartinez@isciii.es
authors: Pablo
authors: P
authors: Martinez-Martin
authors: Martine
authors: M
authors: Jeukens-Visser
authors: Kelly E
authors: KE
authors: Lyons
authors: C
authors: C
authors: Rodriguez-Blazquez
authors: Caroline
authors: C
authors: Selai
authors: Andrew
authors: A
authors: Siderowf
authors: Mickie
authors: M
authors: Welsh
authors: Werner
authors: W
authors: Poewe
authors: Oliver
authors: O
authors: Rascol
authors: Cristina
authors: C
authors: Sampaio
authors: Glenn T
authors: GT
authors: Stebbins
authors: Christopher G
authors: CG
authors: Goetz
authors: Anette
authors: A
authors: Schrag
mesh_terms: D006304:Health Status; D006801:Humans; D010300:Parkinson Disease / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology; D011594:Psychometrics / Q000295:instrumentation* / Q000592:standards; D011788:Quality of Life; D015203:Reproducibility of Results; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires / Q000145:classification / Q000592:standards*