title: The payer's perspective: What is the burden of MS and how should the patient's perspective be integrated in health technology assessment conducted for taking decisions on access to care and treatment?
abstract: In Europe, there exists considerable variability in access to care and treatment for multiple sclerosis (MS).
  
  
  
  To improve this situation, we identified key issues payers should take into account when making decisions on access to care and treatment for MS. We also give an overview of the different dimensions determining total MS burden and discuss why it is key to integrate the patient's perspective in estimating this burden.
  
  
  
  The total burden of MS relates to three dimensions: clinical, humanistic and economic. Although the clinical burden is extensively studied, crucial information is still missing about MS pathophysiology, how MS-related symptoms will develop during the disease course and which patients will progress more rapidly. With regard to the humanistic burden, information on patient-reported quality of life systematically collected in clinical trials for registration purposes is still scarce. Early engagement between pharmaceutical companies, the European Medicines Agency and health technology agencies to prospectively identify key evidence needs for the regulatory and reimbursement processes is required as a first step towards more equal access to care and treatment in MS in Europe. Patients' expectations regarding treatment outcomes should be better researched and integrated into decision-making and patients should be counselled in this process.
authors.affiliation: Department of Neurology, St. Josef-Hospital, Ruhr-University Bochum, Bochum, Germany ralf.gold@rub.de.
authors.forename: Ralf
authors.initials: R
authors.lastname: Gold
authors.affiliation: Department of Complex Decision Sciences and Health Policies, University of Lyon, Lyon, France.
authors.forename: Mondher
authors.initials: M
authors.lastname: Toumi
authors.affiliation: Ismar Healthcare, Lier, Belgium.
authors.forename: Bianca
authors.initials: B
authors.lastname: Meesen
authors.affiliation: National Centre for Pharmacoeconomics (NCPE), Dublin, Ireland.
authors.forename: Emer
authors.initials: E
authors.lastname: Fogarty
mesh_terms: D000066491:Clinical Decision-Making; D003299:Cooperative Behavior; D017281:Cost of Illness; D017048:Health Care Costs; D006297:Health Services Accessibility / Q000191:economics; D054625:Healthcare Disparities / Q000191:economics; D006801:Humans; D007349:Insurance, Health, Reimbursement / Q000191:economics; D033183:Interdisciplinary Communication; D009103:Multiple Sclerosis / Q000191:economics* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D010358:Patient Participation / Q000191:economics*; D018579:Patient Selection; D058996:Quality Improvement; D019984:Quality Indicators, Health Care; D000073597:Stakeholder Participation; D013673:Technology Assessment, Biomedical / Q000191:economics*
keywords: MS burden; Payer’s perspective; health technology assessment; patient’s perspective; treatment access; treatment reimbursement