title: Socioeconomic burden of amyotrophic lateral sclerosis, myasthenia gravis and facioscapulohumeral muscular dystrophy.
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.
authors.affiliation: Department of Neurology, Philipps-University Marburg, Marburg, Germany.
authors.forename: Karsten
authors.initials: K
authors.lastname: Schepelmann
authors.forename: Yaroslav
authors.initials: Y
authors.lastname: Winter
authors.forename: Annika E
authors.initials: AE
authors.lastname: Spottke
authors.forename: Detlef
authors.initials: D
authors.lastname: Claus
authors.forename: Christoph
authors.initials: C
authors.lastname: Grothe
authors.forename: Rolf
authors.initials: R
authors.lastname: Schröder
authors.forename: Dieter
authors.initials: D
authors.lastname: Heuss
authors.forename: Stefan
authors.initials: S
authors.lastname: Vielhaber
authors.forename: Veit
authors.initials: V
authors.lastname: Mylius
authors.forename: Reinhard
authors.initials: R
authors.lastname: Kiefer
authors.forename: Bertold
authors.initials: B
authors.lastname: Schrank
authors.forename: Wolfgang H
authors.initials: WH
authors.lastname: Oertel
authors.forename: Richard
authors.initials: R
authors.lastname: Dodel
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000188:drug therapy / Q000191:economics* / Q000628:therapy; D003430:Cross-Sectional Studies; D003704:Dementia / Q000191:economics; D005260:Female; D005858:Germany; D017048:Health Care Costs; D005102:Health Expenditures; D006801:Humans; D007348:Insurance, Health; D008297:Male; D008875:Middle Aged; D020391:Muscular Dystrophy, Facioscapulohumeral / Q000188:drug therapy / Q000191:economics* / Q000628:therapy; D009157:Myasthenia Gravis / Q000188:drug therapy / Q000191:economics* / Q000628:therapy; D012959:Socioeconomic Factors; D055815:Young Adult