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Long-term treatment risks in multiple sclerosis: risk knowledge and risk perception in a large cohort of mitoxantrone-treated patients.
Hofmann, A; Stellmann, J P; Kasper, J; Ufer, F; Elias, W G; Pauly, I; Repenthin, J; Rosenkranz, T; Weber, T; Köpke, S; Heesen, C.
Affiliation
  • Hofmann A; Institute for Neuroimmunology and Clinical MS Research and Department of Neurology, University Medical Center Hamburg-Eppendorf, Germany.
Mult Scler ; 19(7): 920-5, 2013 Jun.
Article in En | MEDLINE | ID: mdl-23037548
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.

OBJECTIVES:

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%.

CONCLUSION:

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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Health Knowledge, Attitudes, Practice / Mitoxantrone / Multiple Sclerosis, Chronic Progressive / Topoisomerase II Inhibitors Type of study: Etiology_studies / Incidence_studies / Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limits: Female / Humans / Male / Middle aged Language: En Journal: Mult Scler Journal subject: NEUROLOGIA Year: 2013 Document type: Article Affiliation country: Alemania

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Health Knowledge, Attitudes, Practice / Mitoxantrone / Multiple Sclerosis, Chronic Progressive / Topoisomerase II Inhibitors Type of study: Etiology_studies / Incidence_studies / Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limits: Female / Humans / Male / Middle aged Language: En Journal: Mult Scler Journal subject: NEUROLOGIA Year: 2013 Document type: Article Affiliation country: Alemania