title: Review of quality of life instruments for the restless legs syndrome/Willis-Ekbom Disease (RLS/WED): critique and recommendations.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, Vanderbilt University School of Medicine, Nashville, TN.
authors.forename: Arthur S
authors.initials: AS
authors.lastname: Walters
authors.affiliation: Department of Neurology Medical University of Innsbruck, Austria.
authors.forename: Birgit
authors.initials: B
authors.lastname: Frauscher
authors.affiliation: Johns Hopkins University, Baltimore, MD.
authors.forename: Richard
authors.initials: R
authors.lastname: Allen
authors.affiliation: Institute for Medical Research and Sleep Medicine, Schwerin, Germany and University of Rostock, Department of Neurology, Rostock, Germany.
authors.forename: Heike
authors.initials: H
authors.lastname: Benes
authors.affiliation: National Parkinson Foundation Center of Excellence, Kings College, London, UK.
authors.forename: K Ray
authors.initials: KR
authors.lastname: Chaudhuri
authors.affiliation: Sleep Research Institute, Madrid, Spain.
authors.forename: Diego
authors.initials: D
authors.lastname: Garcia-Borreguero
authors.affiliation: Department of Psychiatry, Yale University, New Haven, CT.
authors.forename: Hochang B
authors.initials: HB
authors.lastname: Lee
authors.affiliation: University of Illinois School of Medicine and Carle Foundation Hospital, Urbana, IL.
authors.forename: Daniel L
authors.initials: DL
authors.lastname: Picchietti
authors.affiliation: Department of Neurology, Georg-August University, Goettingen, Germany.
authors.forename: Claudia
authors.initials: C
authors.lastname: Trenkwalder
authors.affiliation: National Center of Epidemiology and CIBERNED, Carlos III Institute of Health, Madrid, Spain.
authors.forename: Pablo
authors.initials: P
authors.lastname: Martinez-Martin
authors.affiliation: Department Neurological Sciences, Rush University Medical Center, Chicago, IL.
authors.forename: Glenn T
authors.initials: GT
authors.lastname: Stebbins
authors.affiliation: UCL Institute of Neurology, University College, London, UK.
authors.forename: Anette
authors.initials: A
authors.lastname: Schrag
mesh_terms: D002648:Child; D006801:Humans; D010372:Pediatrics / Q000379:methods*; D011788:Quality of Life / Q000523:psychology*; D012148:Restless Legs Syndrome / Q000523:psychology*; D011795:Surveys and Questionnaires / Q000592:standards*
keywords: Willis-Ekbom Disease; quality of life; restless legs syndrome; sleep scales