Epub: Hofmann et al. Long-term treatment risks in multiple sclerosis: risk knowledge and risk perception in a large cohort of mitoxantrone-treated patients.Mult Scler. 2012 Oct 4.
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.
"This issue is going to become increasingly complex as the number of new DMTs that emerge increases. The risks and benefits for each drug vary and will need to be personalised. I therefore predict the emergence of a new evidence base in simply communicating information to MSers in away that is easily understandable! This is why we have a designer, Alison Thomson, working in our group to do this."