Decisions on multiple sclerosis immunotherapy: New treatment complexities urge patient engagement

Christoph Heesen, Alessandra Solari, Andrea Giordano, Jürgen Kasper, Sascha Köpke

Research output: Contribution to journalArticle

57 Citations (Scopus)

Abstract

For patients with multiple sclerosis (MS) involvement in treatment decisions becomes ever more imperative. Recently new therapeutic options have become available for the treatment of MS and more will be licensed in the near future. Although more efficacious and easier to administer, the new drugs pose increased risks of severe side effects. Also, new diagnostic criteria lead to more and earlier MS diagnoses. Facing increasingly complex decisions, patients need up-to-date evidence-based information and decision support systems in order to make informed decision together with physicians based on their autonomy preferences. This article summarizes recently terminated and ongoing trials on MS patient education and decision aids conducted by the authors' study groups. Programs on relapse management, immunotherapy, and for patients with suspected and early MS have been developed and evaluated in randomized controlled clinical trials. It could be shown that the programs successfully increase knowledge and allow patients to make informed decisions based on their preferences. For the near future, we aim to develop a modular program for all relevant decisions in MS to increase patients' self-management and empower patients to develop their individual approach with the disease. Faced by a disease with many uncertainties, this should enhance patients' sense of control. Still, it remains a challenge to adequately assess decision quality. Therefore, a study in six European and one Australian centers will start soon aiming to establish adequate tools to assess decision-making quality.

Original languageEnglish
Pages (from-to)192-197
Number of pages6
JournalJournal of the Neurological Sciences
Volume306
Issue number1-2
DOIs
Publication statusPublished - Jul 15 2011

Fingerprint

Patient Participation
Immunotherapy
Multiple Sclerosis
Therapeutics
Decision Support Techniques
Patient Education
Self Care
Uncertainty
Decision Making
Randomized Controlled Trials
Physicians
Recurrence
Pharmaceutical Preparations

Keywords

  • Decision support systems
  • Evidence-based patient information
  • Informed choice
  • Multiple sclerosis
  • Shared decision making

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

Cite this

Decisions on multiple sclerosis immunotherapy : New treatment complexities urge patient engagement. / Heesen, Christoph; Solari, Alessandra; Giordano, Andrea; Kasper, Jürgen; Köpke, Sascha.

In: Journal of the Neurological Sciences, Vol. 306, No. 1-2, 15.07.2011, p. 192-197.

Research output: Contribution to journalArticle

Heesen, Christoph ; Solari, Alessandra ; Giordano, Andrea ; Kasper, Jürgen ; Köpke, Sascha. / Decisions on multiple sclerosis immunotherapy : New treatment complexities urge patient engagement. In: Journal of the Neurological Sciences. 2011 ; Vol. 306, No. 1-2. pp. 192-197.
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