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Fatigue and daytime sleepiness scale in myotonic dystrophy type 1

Authors

  • Mieke C.E. Hermans MD,

    Corresponding author
    1. Department of Neurology, Maastricht University Medical Centre P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands
    • Department of Neurology, Maastricht University Medical Centre P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands

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  • Ingemar S.J. Merkies PhD,

    1. Department of Neurology, Maastricht University Medical Centre P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands
    2. Department of Neurology, Spaarne Hospital, Hoofddorp, The Netherlands
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  • Luc Laberge PhD,

    1. Département des sciences de la santé, Université du Québec à Chicoutimi, Chicoutimi, Québec, Canada
    2. ÉCOBES Recherche et transfert, Cégep de Jonquiàre, Jonquière, Québec, Canada
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  • Eveline W. Blom MD,

    1. Department of Clinical Genetics, Maastricht University Medical Centre, Maastricht, The Netherlands
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  • Alan Tennant PhD,

    1. Department of Rehabilitation Medicine, Faculty of Medicine and Health, University of Leeds, Leeds, UK
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  • Catharina G. Faber PhD

    1. Department of Neurology, Maastricht University Medical Centre P.O. Box 5800, 6202 AZ, Maastricht, The Netherlands
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Abstract

Introduction: Fatigue and excessive daytime sleepiness are frequent complaints in myotonic dystrophy type 1 (DM1) that often overlap. We aimed to construct a combined fatigue and daytime sleepiness rating scale for DM1 using the Rasch measurement model. Methods: Questionnaires, including the Epworth Sleepiness Scale, Fatigue Severity Scale, and Daytime Sleepiness Scale, were completed by 354 patients. Data were subjected to Rasch analyses and tested for required measurement issues such as appropriate response categories, absence of item bias, local independence, and unidimensionality. Results: The initial 22 items did not meet Rasch model expectations. After rescoring and removing misfitting items, the final 12-item scale showed good model fit and unidimensionality. High internal consistency (person separation index = 0.80) and validity were demonstrated. Conclusions: The Rasch-built Fatigue and Daytime Sleepiness Scale, developed specifically for DM1 patients, provides interval measures on a single continuum. Its use is suggested for future clinical trials and therapeutic follow-up. Muscle Nerve, 2013

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