Review of quality of life instruments for the restless legs syndrome/willis-ekbom disease (RLS/WED): Critique and recommendations

MDS Committee on Rating Scales Development

Research output: Contribution to journalReview article

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.

Original languageEnglish (US)
Pages (from-to)1351-1357
Number of pages7
JournalJournal of Clinical Sleep Medicine
Volume10
Issue number12
DOIs
StatePublished - Jan 1 2014

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Restless Legs Syndrome
Quality of Life
Advisory Committees
Therapeutic Human Experimentation
Genetic Research
Symptom Assessment
Sleep
Pediatrics
Research

Keywords

  • Quality of life
  • Restless legs syndrome
  • Sleep scales
  • Willis-Ekbom Disease

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine
  • Neurology
  • Clinical Neurology

Cite this

Review of quality of life instruments for the restless legs syndrome/willis-ekbom disease (RLS/WED) : Critique and recommendations. / MDS Committee on Rating Scales Development.

In: Journal of Clinical Sleep Medicine, Vol. 10, No. 12, 01.01.2014, p. 1351-1357.

Research output: Contribution to journalReview article

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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.",
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author = "{MDS Committee on Rating Scales Development} and Walters, {Arthur S.} and Birgit Frauscher and Richard Allen and Heike Benes and Chaudhuri, {K. Ray} and Diego Garcia-Borreguero and Lee, {Hochang B.} and Picchietti, {Daniel L} and Claudia Trenkwalder and Pablo Martinez-Martin and Stebbins, {Glenn T.} and Anette Schrag and Esther Cubo and Goetz, {Christopher G.} and Deborah Hall and Sheng Luo and Laura Marsh and Bart Post and Cristina Sampaio and Daniel Weintraub",
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AU - MDS Committee on Rating Scales Development

AU - Walters, Arthur S.

AU - Frauscher, Birgit

AU - Allen, Richard

AU - Benes, Heike

AU - Chaudhuri, K. Ray

AU - Garcia-Borreguero, Diego

AU - Lee, Hochang B.

AU - Picchietti, Daniel L

AU - Trenkwalder, Claudia

AU - Martinez-Martin, Pablo

AU - Stebbins, Glenn T.

AU - Schrag, Anette

AU - Cubo, Esther

AU - Goetz, Christopher G.

AU - Hall, Deborah

AU - Luo, Sheng

AU - Marsh, Laura

AU - Post, Bart

AU - Sampaio, Cristina

AU - Weintraub, Daniel

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AB - 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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KW - Restless legs syndrome

KW - Sleep scales

KW - Willis-Ekbom Disease

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