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

J Neurol. 2010 Jan;257(1):15-23. doi: 10.1007/s00415-009-5256-6. Epub 2009 Jul 24.

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.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Aged
  • Aged, 80 and over
  • Amyotrophic Lateral Sclerosis / drug therapy
  • Amyotrophic Lateral Sclerosis / economics*
  • Amyotrophic Lateral Sclerosis / therapy
  • Cross-Sectional Studies
  • Dementia / economics
  • Female
  • Germany
  • Health Care Costs
  • Health Expenditures
  • Humans
  • Insurance, Health
  • Male
  • Middle Aged
  • Muscular Dystrophy, Facioscapulohumeral / drug therapy
  • Muscular Dystrophy, Facioscapulohumeral / economics*
  • Muscular Dystrophy, Facioscapulohumeral / therapy
  • Myasthenia Gravis / drug therapy
  • Myasthenia Gravis / economics*
  • Myasthenia Gravis / therapy
  • Socioeconomic Factors
  • Young Adult