Preferences, Adherence, and Satisfaction: Three Years of Treatment Experiences of People with Multiple Sclerosis

Research output: Contribution to journalResearch articleContributedpeer-review


  • Olaf Hoffmann - , Alexianer Hospital Postdam, Brandenburg Medical School Theodor Fontane, Charité – Universitätsmedizin Berlin (Author)
  • Friedemann Paul - , Charité – Universitätsmedizin Berlin, Max Delbrück Center for Molecular Medicine (MDC) (Author)
  • Rocco Haase - , Department of Neurology (Author)
  • Raimar Kern - , MedicalSyn GmbH (Author)
  • Tjalf Ziemssen - , Department of Neurology (Author)


BACKGROUND: To reduce the risk of long-term disability in people with Multiple Sclerosis (pwMS), an increasing number of disease-modifying immune therapies (DMT) are available, involving diverse mechanisms of action, levels of efficacy, treatment risks, and tolerability aspects. Including patient preferences and expectations in shared decision-making may improve treatment satisfaction, adherence, and persistence.

PURPOSE: To investigate long-term alignment of individual preferences and expectations of pwMS with their actual DMT and its effect on treatment satisfaction, health-related quality of life (HRQoL), adherence, and treatment discontinuation.

METHODS: A total of 401 pwMS beginning a new DMT were enrolled from 2015 to 2018 in a non-interventional study at three German MS centres. Patient preferences regarding DMT, TSQM-9, SF36, and self-reported adherence as well as relapses and EDSS were recorded at baseline and every 3 to 6 months for up to 3 years.

RESULTS: Efficacy and tolerability were the highest-ranking preferences at baseline. Actual selection of DMT corresponded more closely to safety than efficacy, tolerability, or convenience preferences. Participants reported excellent adherence throughout the study. DMT persistence was 69.0%, with earlier discontinuation for injectable vs oral or infusion therapies. Breakthrough disease, rather than patient-reported outcomes, was the main driver of DMT discontinuation. For all routes of administration, global treatment satisfaction increased over time despite lower satisfaction with convenience. Several patterns of changing preferences were observed.

CONCLUSION: This study provides insight into the interaction of DMT preferences of pwMS with their actual treatment experience. Treatment decisions should be aligned with long-term expectations of pwMS to promote continuous adherence.


Original languageEnglish
Pages (from-to)455-466
Number of pages12
JournalPatient preference and adherence
Publication statusPublished - 21 Feb 2024

External IDs

ORCID /0000-0003-2465-4909/work/154190667
PubMed 38406376
unpaywall 10.2147/ppa.s452849
Scopus 85186257137