title: Treatment experience, burden, and unmet needs (TRIBUNE) in Multiple Sclerosis study: the costs and utilities of MS patients in The Netherlands.
abstract: BACKGROUND
  Multiple sclerosis (MS) is an important, highly disabling neurological disease, common among young adults in The Netherlands. Nevertheless, only a few studies to date have measured the burden imposed by MS on society in The Netherlands.
  
  
  OBJECTIVE
  To estimate the cost and quality-of-life associated with MS in The Netherlands, while focusing on the burden of relapses and increasing disease severity.
  
  
  METHODS
  MS patients in The Netherlands (n = 263) completed a web-based questionnaire which captured information on demographics, disease characteristics and severity (Expanded Disability Status Scale [EDSS]), co-morbidities, relapses, resource consumption, utilities, fatigue and activities of daily living (ADL).
  
  
  RESULTS
  Most patients included in the study were receiving treatment for MS (76% of the sample). The mean cost per patient per year increased with worsening disability and was estimated at €30,938, €51,056, and €100,469 for patients with mild (EDSS 0-3), moderate (EDSS 4-6.5), and severe (EDSS 7-9) disability, respectively. The excess cost of relapses was estimated at €8195 among relapsing-remitting patients with EDSS score ≤5. The quality-of-life of patients decreased with disease progression and existence of relapses.
  
  
  CONCLUSIONS
  The cost of MS in The Netherlands was higher compared to the results of previous studies. The TRIBUNE study provides an important update on the economic burden of MS in The Netherlands in an era of more widespread use of disease-modifying therapies. It explores the cost of MS linked to relapses and disease severity and examines the impact of MS on additional health outcomes beyond utilities such as ADL and fatigue.
  
  
  CONCLUSIONS
  Patients were selected from specialized treatment centers, therefore this sample may not be representative of the entire MS population in The Netherlands, i.e., few patients not receiving MS therapies were included. In addition, only a few patients with severe disability were included in the study sample; therefore, results for this disease severity sub-group should be interpreted with caution.
authors.affiliation: Institute of Environmental Medicine, Division of Epidemiology, Karolinska Institutet, Stockholm, Sweden. korinna.karampampa@ki.se
authors.forename: Korinna
authors.initials: K
authors.lastname: Karampampa
authors.forename: Anders
authors.initials: A
authors.lastname: Gustavsson
authors.forename: Erik Th L
authors.initials: ET
authors.lastname: van Munster
authors.forename: Raymond M M
authors.initials: RM
authors.lastname: Hupperts
authors.forename: Evert A C M
authors.initials: EA
authors.lastname: Sanders
authors.forename: Jop
authors.initials: J
authors.lastname: Mostert
authors.forename: Okke L G F
authors.initials: OL
authors.lastname: Sinnige
authors.forename: Jaap
authors.initials: J
authors.lastname: de Graaf
authors.forename: Paul
authors.initials: P
authors.lastname: Pop
authors.forename: Carolin
authors.initials: C
authors.lastname: Miltenburger
authors.forename: Martijn T
authors.initials: MT
authors.lastname: Groot
authors.forename: Milon
authors.initials: M
authors.lastname: Relleke
authors.forename: W S
authors.initials: WS
authors.lastname: van der Hel
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D015897:Comorbidity; D017281:Cost of Illness; D018450:Disease Progression; D004651:Employment / Q000706:statistics & numerical data; D005221:Fatigue; D005260:Female; D006296:Health Services / Q000191:economics* / Q000706:statistics & numerical data; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000145:classification / Q000150:complications / Q000191:economics*; D009426:Netherlands; D011788:Quality of Life; D012008:Recurrence; D012720:Severity of Illness Index; D018582:Sick Leave / Q000191:economics / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires