An interactive web-based programme on relapse management for people with multiple sclerosis (POWER@MS2) - development, feasibility, and pilot testing of a complex intervention.

decision aid feasibility study multiple sclerosis patient empowerment relapse management

Journal

Frontiers in neurology
ISSN: 1664-2295
Titre abrégé: Front Neurol
Pays: Switzerland
ID NLM: 101546899

Informations de publication

Date de publication:
2022
Historique:
received: 07 04 2022
accepted: 05 09 2022
entrez: 10 10 2022
pubmed: 11 10 2022
medline: 11 10 2022
Statut: epublish

Résumé

Despite the lack of high-quality evidence regarding its long-term effectiveness, intravenous corticosteroid therapy is recommended as the standard treatment of acute multiple sclerosis relapses in Germany. High financial expenses and the equivalent effectiveness of oral corticosteroid therapy contrast with this trend. There is an urgent need to provide patients with evidence-based and comprehensible information on relapse management and to actively involve patients in relapse treatment decisions. Web-based decision support on relapse management could be an effective measure to empower people with multiple sclerosis making informed treatment decisions. To develop a web-based programme on relapse management for people with multiple sclerosis and evaluate the feasibility and acceptability of the intervention. The study followed the first two phases of the UK Medical Research Council Framework for complex interventions. The first phase involved the development of an interactive web-based programme on relapse management. The second phase focused on the feasibility and pilot testing of the programme with people with multiple sclerosis and experts with a professional background in multiple sclerosis. Data was obtained using questionnaires with closed- and open-ended questions as well as qualitative semi-structured telephone interviews. Quantitative data was analyzed descriptively, whereas qualitative data was clustered by topic. Feasibility of the intervention programme was tested with 10 people with multiple sclerosis and 10 experts. Feasibility testing indicated good practicability and acceptance of the content. After revision, the programme was piloted with seven people with multiple sclerosis and three experts. The results showed good acceptance in both groups. Based on the feedback, a final revision was performed. Feasibility and pilot testing indicated good user-friendliness, acceptance, and practicability of the programme. The programme is currently evaluated in a randomized controlled trial (Registration Number on ClinicalTrials.gov: NCT04233970). It is expected that the programme will have a positive impact on patients' relapse management and strengthen their autonomy and participation.

Identifiants

pubmed: 36212638
doi: 10.3389/fneur.2022.914814
pmc: PMC9538652
doi:

Banques de données

ClinicalTrials.gov
['NCT04233970']

Types de publication

Journal Article

Langues

eng

Pagination

914814

Informations de copyright

Copyright © 2022 Wenzel, Heesen, Peper, Grentzenberg, Faßhauer, Scheiderbauer, Thale, Meyer, Köpke and Rahn.

Déclaration de conflit d'intérêts

Author CH has received research grants, speaker honoraria, and travel grants from Biogen, Celgene, Genzyme, Roche, and Merck. Authors FT and BM are employed at GAIA AG, the company that developed and operates the intervention described in this study. 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.

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Auteurs

Lisa Wenzel (L)

Medical Faculty and University Hospital Cologne, Institute of Nursing Science, University of Cologne, Cologne, Germany.
Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Christoph Heesen (C)

Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Julia Peper (J)

Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.

Kristina Grentzenberg (K)

Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Edeltraud Faßhauer (E)

Deutsche Multiple Sklerose Gesellschaft, Bundesverband e.V., Hannover, Germany.

Jutta Scheiderbauer (J)

MS-Stiftung Trier, Trier, Germany.

Frithjof Thale (F)

GAIA AG, Hamburg, Germany.

Björn Meyer (B)

GAIA AG, Hamburg, Germany.

Sascha Köpke (S)

Medical Faculty and University Hospital Cologne, Institute of Nursing Science, University of Cologne, Cologne, Germany.

Anne Christin Rahn (AC)

Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.

Classifications MeSH