Abstract
Background: People with multiple sclerosis (pwMS) lack sufficient magnetic resonance imaging (MRI) knowledge to truly participate in frequently occurring MRI-related therapy decisions. An evidence-based patient information (EBPI) about MRI is currently lacking. Objective: The aim of this study was to develop an evidence-based online education program about limitations and benefits of MRI for pwMS. Ultimately, our goal was to improve MRI risk-knowledge, empower pwMS, and promote shared decision-making. Methods: The program's contents were based on literature research and a previous pilot study. It was revised following 2 evaluation rounds with pwMS, MRI experts and expert patients. In a pilot study, n = 92 pwMS received access to the program for 4 weeks. User experiences and acceptance, MRI knowledge (MRI-RIKNO 2.0 questionnaire) and emotions and attitudes toward MRI (MRI-EMA questionnaire) were assessed. Results were compared to a previous survey population of n = 508 pwMS without access to the program. Results: Participants rated the program as easy to understand, interesting, relevant, recommendable, and encouraging. In comparison to pwMS without access to the program, MRI risk-knowledge and perceived MRI competence were higher. Conclusion: Satisfaction with the program and good MRI-risk knowledge after usage demonstrates the need and applicability of EBPI about MRI in MS.
| Original language | English |
|---|---|
| Article number | 856240 |
| Journal | Frontiers in Neurology |
| Volume | 13 |
| Pages (from-to) | 856240 |
| ISSN | 1664-2295 |
| DOIs | |
| Publication status | Published - 28.03.2022 |
Funding
We thank TAKEPART Media + Science GmbH for the graphic design of UMIMS and Katharina Engels for background work. This project was funded by Sanofi Genzyme. The authors declare that this study received funding from Sanofi Genzyme. The funder was not involved in the study design, collection, analysis, interpretation of data, the writing of this article or the decision to submit it for publication. IS has received funding for academic conferences by Sanofi Genzyme. AS has received funding from Roche Pharma. CL received a research grant by the German Federal Ministry for Education and Research, BMBF, German Competence Network Multiple Sclerosis (KKNMS), grant no. 01GI1601I, has received consulting and speaker's honoraria from Biogen Idec, Bayer Schering, Daiichi Sanykyo, Merck Serono, Novartis, Sanofi, Genzyme, and TEVA. DC is a consultant for Biogen and Hoffmann-La Roche. He has received research funding from Hoffmann-La Roche, the International Progressive MS Alliance, the MS Society, and the National Institute for Health Research (NIHR) University College London Hospitals (UCLH) Biomedical Research Centre. He co-supervises a clinical fellowship at the National Hospital for Neurology and Neurosurgery, London, which is supported by Merck. CH received research grants and speaker's honoraria from Biogen, Bristol Myers Squibbs, Merck, Novartis, Roche. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Research Areas and Centers
- Research Area: Center for Population Medicine and Public Health (ZBV)
