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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.

Recent clinical studies in multiple sclerosis (MS) provide new data on the treatment of clinically isolated syndromes, on secondary progression, on direct comparison of immunomodulatory treatments and on dosing issues. All these studies have important implications for the optimized care of MS patients. The multiple sclerosis therapy consensus group (MSTCG) critically evaluated the available data and provides recommendations for the application of immunoprophylactic therapies. Initiation of treatment after the first relapse may be indicated if there is clear evidence on MRI for subclinical dissemination of disease. Recent trials show that the efficacy of interferon beta treatment is more likely if patients in the secondary progressive phase of the disease still have superimposed bouts or other indicators of inflammatory disease activity than without having them. There are now data available, which suggest a possible dose-effect relation for recombinant beta-interferons. These studies have to be interpreted with caution, as some potentially important issues in the design of these studies (e. g. maintenance of blinding in the clinical part of the study) were not adequately addressed. A meta-analysis of selected interferon trials has been published challenging the value of recombinant IFN beta in MS. The pitfalls of that report are discussed in the present review as are other issues relevant to treatment including the new definition of MS, the problem of treatment failure and the impact of cost-effectiveness analyses. The MSTCG panel recommends that the new diagnostic criteria proposed by McDonald et al. should be applied if immunoprophylactic treatment is being considered. The use of standardized clinical documentation is now generally proposed to facilitate the systematic evaluation of individual patients over time and to allow retrospective evaluations in different patient cohorts. This in turn may help in formulating recommendations for the application of innovative products to patients and to health care providers. Moreover, in long-term treated patients, secondary treatment failure should be identified by pre-planned follow-up examinations, and other treatment options should then be considered.

Die Encephalomyelitis disseminata ist und bleibt als haufigste entzundliche Erkrankung des zentralen Nervensystems mit ca. 120000 Patienten in Deutschland die groste diagnostische und therapeutische Herausforderung fur den niedergelassenen Neurologen. Durch die Entwicklung neuartiger, vorwiegend immunmodulatorischer Therapien hat sich das therapeutische Szenario nachhaltig verandert, erstmals ist es moglich, auf den inflammatorischen Prozess direkt einzuwirken und den Krankheitsablauf nachweisbar zu beeinflussen. Dies hat aber auch eine bedeutsame Anderung in dem Anforderungsprofil des niedergelassenen Neurologen bewirkt, der sich erstmals in der Lage sieht, aktiv in den Krankheitsprozess einzugreifen. Der noch bis vor 5 Jahren geltende therapeutische Nihilismus scheint uberwunden zu sein, dennoch zeigt sich auch im Vergleich mit den Landern mit einem ahnlich entwickelten Gesundheitssystem ein nur zogerlicher Einsatz innovativer Medikamente. Der vorliegende Beitrag soll sich im Wesentlichen mit den spezifischen Schwierigkeiten beschaftigen, in Deutschland eine fortgeschrittene ambulante neurologische Medizin zu entwickeln, dargestellt am Beispiel der Multiplen Sklerose (MS).