title: Risk tolerance to MS therapies: Survey results from the NARCOMS registry.
abstract: BACKGROUND
  There is little information about risk acceptance of multiple sclerosis (MS) patients to various MS therapies.
  
  
  OBJECTIVE
  To determine MS patients׳ tolerance to risky therapies and identify associated characteristics.
  
  
  METHODS
  MS patients from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry׳s online cohort were invited to complete questionnaires on decision making and risk tolerance (RT) to two therapeutic scenarios: a theoretical cure for MS [CureMS], with permanent reversal of all MS symptoms but a risk of immediate painless death; and natalizumab [NAT], a real-life scenario with benefits and risks as defined by Phase III trial results.
  
  
  RESULTS
  The median RT for both scenarios was 1:10,000; 15-23% of respondents were not willing to take any risk for their MS therapy. Participants with greater disability or not taking any MS therapy showed a greater RT, while females and those caring for dependents had a lower RT. Females and older age were predictors of lower RT, while increasing disability and greater blunting attitude with respect to information seeking behavior were predictors of higher RT.
  
  
  CONCLUSIONS
  MS patients displayed a wide range of RT for MS therapies. Our study identified gender, age, disability and information seeking behavior to be associated with RT.
authors.affiliation: Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA. Electronic address: foxr@ccf.org.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Fox
authors.affiliation: Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Amber
authors.initials: A
authors.lastname: Salter
authors.affiliation: Department of Quantitative Health Sciences, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Joan M
authors.initials: JM
authors.lastname: Alster
authors.affiliation: Center for Health Care and Research Policy, Case Western Reserve University at MetroHealth Medical Center, Cleveland, OH, USA.
authors.forename: Neal V
authors.initials: NV
authors.lastname: Dawson
authors.affiliation: Department of Quantitative Health Sciences, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Michael W
authors.initials: MW
authors.lastname: Kattan
authors.affiliation: Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Deborah
authors.initials: D
authors.lastname: Miller
authors.affiliation: Mellen Center for Multiple Sclerosis, Neurological Institute, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Sneha
authors.initials: S
authors.lastname: Ramesh
authors.affiliation: Barrows Neurological Institute, Phoenix, AZ, USA.
authors.forename: Tuula
authors.initials: T
authors.lastname: Tyry
authors.affiliation: Department of Quantitative Health Sciences, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Brian W
authors.initials: BW
authors.lastname: Wells
authors.affiliation: Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Gary
authors.initials: G
authors.lastname: Cutter
mesh_terms: D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007155:Immunologic Factors / Q000627:therapeutic use; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy*; D000069442:Natalizumab / Q000627:therapeutic use; D012042:Registries; D012306:Risk; D011795:Surveys and Questionnaires
chemical_list: D007155:Immunologic Factors; D000069442:Natalizumab
keywords: Decision making; Disease modifying therapy; Information seeking behavior; Multiple sclerosis; NARCOMS registry; Risk tolerance