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
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
914814Informations 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.
Références
Mult Scler. 2004 Dec;10(6):643-50
pubmed: 15584489
Biomed Res Int. 2015;2015:817238
pubmed: 25802867
BMC Health Serv Res. 2015 Jul 01;15:252
pubmed: 26126998
BMC Public Health. 2013 Oct 30;13:1027
pubmed: 24172020
Patient Educ Couns. 2010 Mar;78(3):316-28
pubmed: 20005067
Trials. 2021 Feb 14;22(1):139
pubmed: 33583424
Cochrane Database Syst Rev. 2009 Jul 08;(3):CD006921
pubmed: 19588409
J Telemed Telecare. 2020 Aug-Sep;26(7-8):400-413
pubmed: 31042118
J Neurol Neurosurg Psychiatry. 2018 Sep;89(9):970-976
pubmed: 29549193
Patient Educ Couns. 2012 Jan;86(1):91-7
pubmed: 21507595
Degener Neurol Neuromuscul Dis. 2019 Jul 01;9:55-78
pubmed: 31308790
BMC Neurol. 2013 Apr 25;13:37
pubmed: 23617555
JMIR Rehabil Assist Technol. 2018 Apr 24;5(1):e5
pubmed: 29691208
Eur J Neurol. 2008 Dec;15(12):1345-52
pubmed: 19049552
J Neurol Neurosurg Psychiatry. 2014 Apr;85(4):411-8
pubmed: 24104856
PLoS One. 2013 Jun 18;8(6):e66127
pubmed: 23823627
Cochrane Database Syst Rev. 2000;(4):CD001331
pubmed: 11034713
Mult Scler. 2020 Dec;26(14):1807-1808
pubmed: 33174499
BMC Med Inform Decis Mak. 2013;13 Suppl 2:S1
pubmed: 24624947
JAMA. 1993 Apr 28;269(16):2110-2
pubmed: 8468765
Acta Neurol Scand. 2004 Jul;110(1):1-5
pubmed: 15180800
BMJ. 2008 Apr 26;336(7650):924-6
pubmed: 18436948
BMJ. 2008 Sep 29;337:a1655
pubmed: 18824488
BMJ Open. 2021 Oct 1;11(10):e046874
pubmed: 34598981
Cochrane Database Syst Rev. 2015 Aug 14;(8):CD001430
pubmed: 26273799
BMC Med Inform Decis Mak. 2012 Jul 02;12:60
pubmed: 22747904
Neurology. 2014 Jul 15;83(3):278-86
pubmed: 24871874
Mult Scler Relat Disord. 2021 Oct;55:103182
pubmed: 34358850
Eur J Phys Rehabil Med. 2015 Jun;51(3):311-25
pubmed: 25943744
BMC Health Serv Res. 2012 Sep 06;12:303
pubmed: 22950744
BMJ. 2014 May 14;348:g3178
pubmed: 25134115
N Engl J Med. 2016 Jul 14;375(2):154-61
pubmed: 27410924
Arch Intern Med. 2003 Jan 13;163(1):83-90
pubmed: 12523921
Lancet Psychiatry. 2015 Mar;2(3):217-23
pubmed: 26359900
Mult Scler. 2020 Dec;26(14):1816-1821
pubmed: 33174475
Int J Nurs Stud. 2018 Feb;78:26-36
pubmed: 28982479
Mult Scler. 2009 Jan;15(1):96-104
pubmed: 18845657