TY - JOUR
T1 - Review of quality of life instruments for the restless legs syndrome/willis-ekbom disease (RLS/WED)
T2 - Critique and recommendations
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
PY - 2014
Y1 - 2014
N2 - 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.
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.
KW - Quality of life
KW - Restless legs syndrome
KW - Sleep scales
KW - Willis-Ekbom Disease
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U2 - 10.5664/jcsm.4300
DO - 10.5664/jcsm.4300
M3 - Review article
C2 - 25348243
AN - SCOPUS:84918806419
SN - 1550-9389
VL - 10
SP - 1351
EP - 1357
JO - Journal of Clinical Sleep Medicine
JF - Journal of Clinical Sleep Medicine
IS - 12
ER -