BACKGROUND: Balancing treatment benefits and risks is part of a shared decision-making process before initiating any treatment in MS. MSers 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 MSers currently or previously treated with mitoxantrone is unknown.
OBJECTIVES: The objective of this article is to conduct a retrospective cohort study in greater Hamburg, Germany, to estimate risk awareness and perception in MSers treated with mitoxantrone.
METHODS: MSers 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: 51% in the cohort of n = 575 MSers returned the questionnaire. 40% 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 MSers did not report an increase of worries. The EBPI was appreciated and recommended by 85%.
CONCLUSION: Risk awareness of mitoxantrone-treated MSers is insufficient, but can be increased by EBPI without increasing worries. Continued MSer information during and after treatment should be implemented in management algorithms.