title: Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists.
abstract: BACKGROUND
  Natalizumab is associated with the potentially life-threatening side-effect progressive multifocal leukoencephalopathy (PML). Little is known about patients' and physicians' risk estimates and attitudes towards natalizumab treatment.
  
  
  METHODS
  Consecutive natalizumab-treated patients (n = 69) and neurologists (n = 66) in two centres and cooperating private practices received an evidence-based three-page information leaflet about natalizumab-associated PML and an evaluation sheet.
  
  
  RESULTS
  After reading the information, patients were significantly more likely than physicians to intend continuation of natalizumab treatment and willing to accept higher risks of PML: 49% of physicians would stop treatment at a PML risk of 2:10,000 or lower, while only 17% of patients would do so (p < 0.001). This difference could not be explained by risk calculation abilities or lack of understanding. Both groups overestimated natalizumab treatment effects.
  
  
  CONCLUSIONS
  Patients had a significantly worse perception of multiple sclerosis as a malignant disease. We conclude that patients were willing to accept a higher risk of PML than neurologists. Coherent with their perception of risks and benefits, patients were also more willing to continue treatment. Open information about treatment-related risks is appreciated and might support shared decision making.
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INiMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany. heesen@uke.uni-hamburg.de
authors.forename: Christoph
authors.initials: C
authors.lastname: Heesen
authors.forename: Ingo
authors.initials: I
authors.lastname: Kleiter
authors.forename: Franziska
authors.initials: F
authors.lastname: Nguyen
authors.forename: Nina
authors.initials: N
authors.lastname: Schäffler
authors.forename: Jürgen
authors.initials: J
authors.lastname: Kasper
authors.forename: Sascha
authors.initials: S
authors.lastname: Köpke
authors.forename: Wolfgang
authors.initials: W
authors.lastname: Gaissmaier
mesh_terms: D000328:Adult; D000911:Antibodies, Monoclonal / Q000009:adverse effects*; D061067:Antibodies, Monoclonal, Humanized; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007155:Immunologic Factors / Q000009:adverse effects*; D007968:Leukoencephalopathy, Progressive Multifocal / Q000139:chemically induced; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000188:drug therapy*; D000069442:Natalizumab; D010361:Patients; D010465:Perception; D010817:Physician-Patient Relations; D010820:Physicians; D012306:Risk
chemical_list: D000911:Antibodies, Monoclonal; D061067:Antibodies, Monoclonal, Humanized; D007155:Immunologic Factors; D000069442:Natalizumab