Understanding Magnetic Resonance Imaging in Multiple Sclerosis (UMIMS): Development and Piloting of an Online Education Program About Magnetic Resonance Imaging for People With Multiple Sclerosis

Magalie Freund; Insa Schiffmann; Anne Christin Rahn; Declan Chard; Carsten Lukas; Jutta Scheiderbauer; Anna Sippel; Christoph Heesen

doi:10.3389/fneur.2022.856240

Understanding Magnetic Resonance Imaging in Multiple Sclerosis (UMIMS): Development and Piloting of an Online Education Program About Magnetic Resonance Imaging for People With Multiple Sclerosis

Front Neurol. 2022 Mar 28:13:856240. doi: 10.3389/fneur.2022.856240. eCollection 2022.

Authors

Magalie Freund¹, Insa Schiffmann^{1

2}, Anne Christin Rahn^{1

3}, Declan Chard^{4

5}, Carsten Lukas^{6

7}, Jutta Scheiderbauer⁸, Anna Sippel¹, Christoph Heesen^{1

2}

Affiliations

¹ Department of Neurology, Institute of Neuroimmunology and Multiple Sclerosis, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
² Department of Neurology, University Medical Centre Hamburg-Eppendorf (UKE), Hamburg, Germany.
³ Institute for Social Medicine and Epidemiology, Nursing Research Unit, University of Lübeck, Lübeck, Germany.
⁴ NMR Research Unit, Queen Square MS Centre, Department of Neuroinflammation, UCL Institute of Neurology, Faculty of Brain Sciences, University College London, London, United Kingdom.
⁵ National Institute for Health Research (NIHR), University College London Hospitals (UCLH), Biomedical Research Centre, London, United Kingdom.
⁶ Department of Diagnostic and Interventional Radiology and Nuclear Medicine, Institute of Neuroradiology, St. Josef Hospital, Ruhr-University Bochum, Bochum, Germany.
⁷ Department of Diagnostic and Interventional Radiology and Nuclear Medicine, St. Josef Hospital, Ruhr-University Bochum, Bochum, Germany.
⁸ Foundation for Self-Determination and Self-Representation for People With MS, Trier, Germany.

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.

Keywords: MRI-risk knowledge; magnetic resonance imaging; multiple sclerosis; online education; pwMS; shared decision making.