Arthur S Walters1, Birgit Frauscher2, Richard Allen3, Heike Benes4, K Ray Chaudhuri5, Diego Garcia-Borreguero6, Hochang B Lee7, Daniel L Picchietti8, Claudia Trenkwalder9, Pablo Martinez-Martin10, Glenn T Stebbins11, Anette Schrag12. 1. Department of Neurology, Vanderbilt University School of Medicine, Nashville, TN. 2. Department of Neurology Medical University of Innsbruck, Austria. 3. Johns Hopkins University, Baltimore, MD. 4. Institute for Medical Research and Sleep Medicine, Schwerin, Germany and University of Rostock, Department of Neurology, Rostock, Germany. 5. National Parkinson Foundation Center of Excellence, Kings College, London, UK. 6. Sleep Research Institute, Madrid, Spain. 7. Department of Psychiatry, Yale University, New Haven, CT. 8. University of Illinois School of Medicine and Carle Foundation Hospital, Urbana, IL. 9. Department of Neurology, Georg-August University, Goettingen, Germany. 10. National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain. 11. Department Neurological Sciences, Rush University Medical Center, Chicago, IL. 12. UCL Institute of Neurology, University College, London, UK.
Abstract
OBJECTIVES: Over the last decade therapeutic, pathogenetic, epidemiological and genetic research in restless legs syndrome/Willis-Ekbom Disease (RLS/WED) has required the development of specific quality of life scales and sleep scales. A Movement Disorder Society Task Force formally evaluated the quality of these scales. METHODS: A literature search retrieved 5 quality of life instruments specific to RLS. As per MDS protocol, each scale was evaluated by 3 criteria which included (a) use in RLS, (b) use by research or clinical groups other than the group that developed the scale, and (c) formal validation and adequate clinimetric properties. Scales were categorized as "Recommended" when all 3 criteria were met, "Suggested" when used for RLS but only one of the other criteria was met, and "Listed" when used in RLS but there was absence of the other two criteria. Details regarding the development, use and clinimetric properties of each instrument are summarized along with the recommendations of the Task Force. RESULTS AND CONCLUSION: The Restless Legs Syndrome Quality of Life Scale-Abetz (RLS-QOL-Abetz) is the only scale designated as Recommended for use in cross-sectional assessments and treatment-related changes in RLS quality of life. Daily diaries hold future promise for the evaluation of RLS symptoms without the need for retrospective recall. An important need is the development of pediatric RLS quality of life instruments.
OBJECTIVES: Over the last decade therapeutic, pathogenetic, epidemiological and genetic research in restless legs syndrome/Willis-Ekbom Disease (RLS/WED) has required the development of specific quality of life scales and sleep scales. A Movement Disorder Society Task Force formally evaluated the quality of these scales. METHODS: A literature search retrieved 5 quality of life instruments specific to RLS. As per MDS protocol, each scale was evaluated by 3 criteria which included (a) use in RLS, (b) use by research or clinical groups other than the group that developed the scale, and (c) formal validation and adequate clinimetric properties. Scales were categorized as "Recommended" when all 3 criteria were met, "Suggested" when used for RLS but only one of the other criteria was met, and "Listed" when used in RLS but there was absence of the other two criteria. Details regarding the development, use and clinimetric properties of each instrument are summarized along with the recommendations of the Task Force. RESULTS AND CONCLUSION: The Restless Legs Syndrome Quality of Life Scale-Abetz (RLS-QOL-Abetz) is the only scale designated as Recommended for use in cross-sectional assessments and treatment-related changes in RLS quality of life. Daily diaries hold future promise for the evaluation of RLS symptoms without the need for retrospective recall. An important need is the development of pediatric RLS quality of life instruments.
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