Patient Experiences of Multiple Sclerosis (PExMS)
Impact of a Multimedia Website With Patient Experiences of Multiple Sclerosis (PExMS) on Immunotherapy Decision-making: a Pilot Randomised Controlled Trial in a Mixed-methods Design
What it found
A paper reports the results; we have not read it yet. See Papers below.
What was tested
Treatment tested
- PExMS and DECIMS-Wiki
Compared with
- DECIMS-Wiki
What it measured
Main measures
Testing the feasibility of an intervention using patients' experiences as a supplement to evidence-based information in a pilot randomized controlled trial
Baseline and up to 6 months after beginning, changing or stopping of the immunotherapy
Feasibility
Other measures (7)
Preparation for Decision Making
Up to 14 days after usage of intervention or comparator website(s)
Decisional Conflict
Baseline and up to 14 days after usage of intervention or comparator website(s)
Self-reported impact of eHealth on its users
eHIQ-Part-1 at baseline and the eHIQ-Part-2 up to 14 days after usage of intervention or comparator website(s)
Affective forecasting in regard to immunotherapies
Baseline and up to 14 days after usage of intervention or comparator website(s) and and 6 months after the beginning of the immunotherapy
Thinking and memorySelf-confidence in decision-making
Baseline and up to 14 days after usage of intervention or comparator website(s)
Patients' beliefs about the necessity of their medication and their concerns about the current medication
Baseline and up to 14 days after usage of intervention or comparator website(s)
Adherence
6 months after beginning, changing or stopping of the immunotherapy
Quality of life (reported by participants)
Who could take part
Relapsing MS · 18 and over
Show the full criteria
Inclusion criteria
* persons with relapsing-remitting multiple sclerosis * being ≥18 years old * considering starting, switching or stopping any immunotherapy
Exclusion criteria
* persons with secondary progressive multiple sclerosis or primary progressive multiple sclerosis * persons with major cognitive deficits * persons having poor German language skills * persons who participated in the development phase of the PExMS-website, which took place prior to the pilot randomised controlled trial
As registered. Criteria can change, so ask the trial team or your neurologist.
About this trial
In the sponsor's words
Besides coping with the diagnosis, people with multiple sclerosis have to make complex decisions such as deciding about immunotherapies. They search not only for factual information, but also for reports of patient experiences (PEx). The investigators aim to evaluate in a randomised controlled pilot trial whether a website presenting PEx as an adjunct to factual information may help people with multiple sclerosis in their immunotherapy decision-making processes.
Papers
Results
Barabasch A, Riemann-Lorenz K, Kofahl C, Scheiderbauer J, Eklund D, Kleiter I, Kasper J, Kopke S, Lezius S, Zapf A, Rahn AC, Heesen C. Impact of a multimedia website with patient experiences of multiple sclerosis (PExMS) on immunotherapy decision-making: study protocol for a pilot randomised controlled trial in a mixed-methods design. Pilot Feasibility Stud. 2021 Jan 7;7(1):16. doi: 10.1186/s40814Background
Browne P, Chandraratna D, Angood C, Tremlett H, Baker C, Taylor BV, Thompson AJ. Atlas of Multiple Sclerosis 2013: A growing global problem with widespread inequity. Neurology. 2014 Sep 9;83(11):1022-4. doi: 10.1212/WNL.0000000000000768. No abstract available.Background
Heesen C, Kasper J, Segal J, Kopke S, Muhlhauser I. Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis. Mult Scler. 2004 Dec;10(6):643-50. doi: 10.1191/1352458504ms1112oa.Background
Heesen C, Schaffler N, Kasper J, Muhlhauser I, Kopke S. Suspected multiple sclerosis - what to do? Evaluation of a patient information leaflet. Mult Scler. 2009 Sep;15(9):1103-12. doi: 10.1177/1352458509106508. Epub 2009 Jul 22.Background
Heesen C, Kolbeck J, Gold SM, Schulz H, Schulz KH. Delivering the diagnosis of MS--results of a survey among patients and neurologists. Acta Neurol Scand. 2003 May;107(5):363-8. doi: 10.1034/j.1600-0404.2003.00086.x.Background
Rahn AC, Kopke S, Kasper J, Vettorazzi E, Muhlhauser I, Heesen C. Evaluator-blinded trial evaluating nurse-led immunotherapy DEcision Coaching In persons with relapsing-remitting Multiple Sclerosis (DECIMS) and accompanying process evaluation: study protocol for a cluster randomised controlled trial. Trials. 2015 Mar 21;16:106. doi: 10.1186/s13063-015-0611-7.Background
Newhouse N, Martin A, Jawad S, Yu LM, Davoudianfar M, Locock L, Ziebland S, Powell J. Randomised feasibility study of a novel experience-based internet intervention to support self-management in chronic asthma. BMJ Open. 2016 Dec 28;6(12):e013401. doi: 10.1136/bmjopen-2016-013401.Background
Ziebland S, Powell J, Briggs P, Jenkinson C, Wyke S, Sillence E, Harris P, Perera R, Mazanderani F, Martin A, Locock L, Kelly L, Booth M, Gann B, Newhouse N, Farmer A. Examining the role of patients' experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health. Southampton (UK): NIHR Journals Library; 2016 Nov. AvailablBackground
Powell J, Newhouse N, Martin A, Jawad S, Yu LM, Davoudianfar M, Locock L, Ziebland S. A novel experience-based internet intervention for smoking cessation: feasibility randomised controlled trial. BMC Public Health. 2016 Nov 11;16(1):1156. doi: 10.1186/s12889-016-3821-3.Background
Dillard AJ, Fagerlin A, Dal Cin S, Zikmund-Fisher BJ, Ubel PA. Narratives that address affective forecasting errors reduce perceived barriers to colorectal cancer screening. Soc Sci Med. 2010 Jul;71(1):45-52. doi: 10.1016/j.socscimed.2010.02.038. Epub 2010 Mar 21.
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History
Started
Jan 2024
Main results due
Dec 2025
Finished
Dec 2025