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Socioeconomic burden of amyotrophic lateral sclerosis, myasthenia gravis and facioscapulohumeral muscular dystrophy

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Abstract

Neuromuscular disorders (NMD) are chronic devastating diseases. The aim of this multicenter cross-sectional study was to evaluate the socioeconomic impact of three NMDs in Germany. Patients (n = 107) with amyotrophic lateral sclerosis (ALS), myasthenia gravis (MG) or facioscapulohumeral muscular dystrophy (FSHD) were recruited consecutively in seven centers in Germany. The health-economic data were collected using a “bottom-up” approach consisting of comprehensive questionnaires and patient diaries. Costs were evaluated from the societal perspective in 2009 Euros (EUR). Total annual costs from the societal perspective were EUR 36,380 (95% CI 27,090–47,970) per patient in ALS, EUR 26,240 (95% CI 17,770–37,940) in FSHD and EUR 14,950 (95% CI 10,470–21,730) in MG. The main components of costs were the expenditures of health insurance and the loss of productivity of patients and their caregivers. The following independent cost-driving factors were identified: disease severity, assistance in activities of daily living (ADL), dementia and younger age in ALS, disease severity in FSHD and assistance in ADL, disease severity and assistance in ADL in MG. The socioeconomic burden of NMDs in Germany is considerable. Further studies evaluating both the health-economic and clinical effects of NMD treatment as well as disease management programs and benchmarking activities are necessary.

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Acknowledgments

This study was sponsored by the German Society for Muscle Disorders (Deutsche Gesellschaft für Muskelkranke).

Conflict of interest statement

None declared.

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Authors and Affiliations

  1. Department of Neurology, Philipps-University Marburg, Rudolf-Bultmannstr. 8, 35039, Marburg, Germany

    Karsten Schepelmann, Yaroslav Winter, Veit Mylius, Wolfgang H. Oertel & Richard Dodel

  2. Department of Neurology, Friedrich-Wilhelms-University, Bonn, Germany

    Annika E. Spottke, Christoph Grothe & Rolf Schröder

  3. Department of Neurology, Klinkum Darmstadt, Darmstadt, Germany

    Detlef Claus

  4. Department of Neurology, Friedrich-Alexander University Erlangen, Erlangen, Germany

    Dieter Heuss

  5. Department of Neurology, Otto-von-Guericke University Magdeburg, Magdeburg, Germany

    Stefan Vielhaber

  6. Department of Neurology, University of Muenster, Muenster, Germany

    Reinhard Kiefer

  7. Department of Neurology, Deutsche Klinik fuer Diagnostik, Wiesbaden, Germany

    Bertold Schrank

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  1. Karsten Schepelmann
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  2. Yaroslav Winter
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  3. Annika E. Spottke
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  12. Wolfgang H. Oertel
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  13. Richard Dodel
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Correspondence to Richard Dodel.

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Schepelmann, K., Winter, Y., Spottke, A.E. et al. Socioeconomic burden of amyotrophic lateral sclerosis, myasthenia gravis and facioscapulohumeral muscular dystrophy. J Neurol 257, 15–23 (2010). https://doi.org/10.1007/s00415-009-5256-6

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  • DOI: https://doi.org/10.1007/s00415-009-5256-6

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