title: Long-term treatment risks in multiple sclerosis: risk knowledge and risk perception in a large cohort of mitoxantrone-treated patients.
abstract: BACKGROUND
  Balancing treatment benefits and risks is part of a shared decision-making process before initiating any treatment in multiple sclerosis (MS). Patients understand, appreciate and profit from evidence-based patient information (EBPI). While these processes are well known, long-term risk awareness and risk processing of patients has not been studied. Mitoxantrone treatment in MS is associated with long-term major potential harms - leukaemia (LK) and cardiotoxicity (CT). The risk knowledge and perception among patients currently or previously treated with mitoxantrone is unknown.
  
  
  OBJECTIVE
  The objective of this article is to conduct a retrospective cohort study in greater Hamburg, Germany, to estimate risk awareness and perception in MS patients treated with mitoxantrone.
  
  
  METHODS
  MS patients with at least one dose of mitoxantrone between 1991 and 2010 from six major MS centres in greater Hamburg received a questionnaire assessing risk awareness and perception as well as a written EBPI about mitoxantrone-associated LK and CT.
  
  
  RESULTS
  Fifty-one per cent in the cohort of n = 575 patients returned the questionnaire. Forty per cent correctly estimated the risk of LK (CT 16%); 56% underestimated the risk (CT 82%). Reading the information increased the accuracy of LK risk estimation, and patients did not report an increase of worries. The EBPI was appreciated and recommended by 85%.
  
  
  CONCLUSIONS
  Risk awareness of mitoxantrone-treated patients is insufficient, but can be increased by EBPI without increasing worries. Continued patient information during and after treatment should be implemented in management algorithms.
authors.affiliation: Institute for Neuroimmunology and Clinical MS Research and Department of Neurology, University Medical Center Hamburg-Eppendorf, Germany.
authors.forename: A
authors.initials: A
authors.lastname: Hofmann
authors.forename: J P
authors.initials: JP
authors.lastname: Stellmann
authors.forename: J
authors.initials: J
authors.lastname: Kasper
authors.forename: F
authors.initials: F
authors.lastname: Ufer
authors.forename: W G
authors.initials: WG
authors.lastname: Elias
authors.forename: I
authors.initials: I
authors.lastname: Pauly
authors.forename: J
authors.initials: J
authors.lastname: Repenthin
authors.forename: T
authors.initials: T
authors.lastname: Rosenkranz
authors.forename: T
authors.initials: T
authors.lastname: Weber
authors.forename: S
authors.initials: S
authors.lastname: Köpke
authors.forename: C
authors.initials: C
authors.lastname: Heesen
mesh_terms: D015331:Cohort Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D008942:Mitoxantrone / Q000009:adverse effects*; D020528:Multiple Sclerosis, Chronic Progressive / Q000188:drug therapy*; D012189:Retrospective Studies; D012306:Risk; D011795:Surveys and Questionnaires; D059005:Topoisomerase II Inhibitors / Q000009:adverse effects*
chemical_list: D059005:Topoisomerase II Inhibitors; D008942:Mitoxantrone