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Published in: BMC Neurology 1/2022

Open Access 01-12-2022 | Multiple Sclerosis | Research

Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study

Authors: Anna Sippel, Jutta Scheiderbauer, Désirée Eklund, Sigrid Arnade, Stephan Schmidt, Ingo Kleiter, Rebecca Morrison, Christopher Kofahl, Christoph Heesen

Published in: BMC Neurology | Issue 1/2022

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Abstract

Background

A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS.

Methods

A mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis.

Results

Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies.

Conclusions

The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.
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Metadata
Title
Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study
Authors
Anna Sippel
Jutta Scheiderbauer
Désirée Eklund
Sigrid Arnade
Stephan Schmidt
Ingo Kleiter
Rebecca Morrison
Christopher Kofahl
Christoph Heesen
Publication date
01-12-2022
Publisher
BioMed Central
Published in
BMC Neurology / Issue 1/2022
Electronic ISSN: 1471-2377
DOI
https://doi.org/10.1186/s12883-022-02663-9

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