The costs of amyotrophic lateral sclerosis, according to type of care

Amyotroph Lateral Scler. 2009 Feb;10(1):27-34. doi: 10.1080/17482960802103131.


Our objective was to estimate the economic burden of patients with amyotrophic lateral sclerosis (ALS) and to examine the effect of treatment in a multidisciplinary ALS treatment centre versus general care on costs and to describe differences in costs according to clinical characteristics. In a cross-sectional study 208 patients with ALS and their caregivers were interviewed and were asked to fill in a cost diary for six months. Patients were divided in groups according to type of treatment they received and according to clinical characteristics (site of onset, severity). The direct healthcare and non-healthcare costs were calculated according to Dutch guidelines for cost analysis in healthcare research, standardized for the year 2003. Ninety-eight patients were included when they had filled in the cost diary for at least three months and were affected for three years or less. Mean monthly costs were 1336 euros for the group receiving multidisciplinary care and 1271 euros for those receiving general care. This study shows that the costs of multidisciplinary ALS care were practically identical to the costs of general care. Earlier study showed that patients receiving multidisciplinary care had a better quality of life; therefore, the present study encourages the formation of multidisciplinary teams of professionals specialized in ALS care to further improve standards of care and QoL of patients suffering from ALS.

MeSH terms

  • Amyotrophic Lateral Sclerosis* / economics
  • Amyotrophic Lateral Sclerosis* / therapy
  • Caregivers
  • Cost of Illness*
  • Cross-Sectional Studies
  • Health Care Costs*
  • Humans
  • Netherlands
  • Patient Care Team
  • Quality of Health Care
  • Quality of Life
  • Surveys and Questionnaires