Article
Feasibility and pilot testing of an interactive web-based decision-making programme on relapse management for people with multiple sclerosis (POWER@MS2)
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Authors
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Lisa Wenzel
- Institute of Nursing Science, University of Cologne, Deutschland; Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Deutschland
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Jutta Scheiderbauer
- MS-Stiftung Trier, Deutschland
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Björn Meyer
- GAIA AG, Hamburg, Deutschland
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Frithjof Thale
- GAIA AG, Hamburg, Deutschland
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Judith Haas
- Deutsche Multiple Sklerose Gesellschaft (DMSG), Bundesverband e.V., Hannover, Deutschland
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Matthias Kretzler
- BKK Dachverband e.V., Berlin, Deutschland
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Andrea Icks
- Institute for Health Services Research and Health Economics, Center for Health and Society, Heinrich Heine University Düsseldorf, Deutschland
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Tim Friede
- Department of Medical Statistics, University Medical Center Göttingen, Deutschland
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Christoph Heesen
- Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Deutschland; Department of Neurology, University Medical Center Hamburg-Eppendorf (UKE), Deutschland
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Sascha Köpke
- Institute of Nursing Science, University of Cologne, Deutschland
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Anne Christin Rahn
- Department of Health Services Research, Carl von Ossietzky University Oldenburg, Deutschland
| Published: | September 25, 2020 |
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Outline
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Background: In about 85% of cases, multiple sclerosis (MS) manifests with a relapsing-remitting disease course. In Germany, intravenous therapy with high-dose corticosteroids is the standard treatment for acute relapses. Informed treatment decisions on relapse management are required as corticosteroid treatment leads to a faster reduction of symptoms in only about 25% of treated patients and can be administered equivalently orally. Also, there is no evidence for long-term benefits of corticosteroid therapy. An earlier randomized controlled trial (RCT) showed that an evidence-based patient information and group training programme on relapse management leads to a significant increase in informed decision-making and a reduction of intravenous therapies.
Objective: This study aimed at feasibility and pilot testing of an interactive web-based programme on relapse management in people with MS (PwMS) and experts.
Methods: The study followed the UK Medical Research Council guidance for complex interventions. After development, the feasibility of the programme was tested with PwMS and experts focusing acceptability and usability. Afterwards the revised programme was piloted with PwMS and again assessed by experts. Data was obtained using questionnaires with open-ended and closed-ended questions as well as qualitative semi-structured telephone interviews.
Results: 10 PwMS and 10 MS experts (patient representatives and neurologists) were included in the feasibility study. Evaluation of feasibility indicated good practicability and acceptance of the content. Some PwMS suggested that the programme might be better suitable for people with early MS and reported a lack of information on other treatment options. The experts’ feedback primarily focussed on the concern that the neurologists’ role in relapse treatment decision-making was not adequately addressed. After revision, the programme was piloted with 7 PwMS and 3 experts showing good acceptance in both groups. Although a few PwMS still recommended more information on alternative and complementary treatment options, most reported having gained important new information and were happy to be able to access evidence-based patient information in an interactive and easily accessible way. Based on the feedback, a final revision was performed.
Discussion: The results of the feasibility and pilot testing indicated user-friendliness, acceptability and practicability of the programme. The findings suggest that this easily accessible web-based programme may be a promising approach to provide PwMS with evidence-based information on relapse management. The programme is currently evaluated in a web-based RCT with 188 patients with active relapsing-remitting MS.
Implications: It is expected that the programme will have a positive impact on patients’ relapse management and strengthen their autonomy and participation. Similar platforms could be developed and evaluated for e.g. rheumatic diseases or chronic infectious diseases.
