Article
Patient Experiences of Multiple Sclerosis (PExMS) – Development of a Website with Patient Experiences of Multiple Sclerosis Therapies
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Authors
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Anna Barabasch
- Universitätsklinikum Hamburg-Eppendorf, Institut für Neuroimmunologie und Multiple Sklerose, Hamburg, Deutschland
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Karin Riemann-Lorenz
- Universitätsklinikum Hamburg-Eppendorf, Institut für Neuroimmunologie und Multiple Sklerose, Hamburg, Deutschland
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Nadine Janis Pohonsch
- Universitätsklinikum Hamburg-Eppendorf, Institut und Poliklinik für Allgemeinmedizin, Hamburg, Deutschland
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Christopher Kofahl
- Universitätsklinikum Hamburg-Eppendorf, Institut für Medizinische Soziologie, Hamburg, Deutschland
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Jutta Scheiderbauer
- MS-Stiftung Trier, Trier, Deutschland
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Desiree Eklund
- MS-Stiftung Trier, Trier, Deutschland
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Stephan Schmidt
- Gesundheitszentrum St. Johannes Hospital, Deutschland
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Sigrid Arnade
- LEBENSNERV – Stiftung zur Förderung der psychosomatischen MS-Forschung, Deutschland
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Christian Dettmers
- Kliniken Schmieder Konstanz, Konstanz, Deutschland
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Roger Schmitt
- Kliniken Schmieder Konstanz, Konstanz, Deutschland
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Ingo Kleiter
- Marianne-Strauß-Klinik, Deutschland
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Anne Christin Rahn
- Universitätsklinikum Hamburg-Eppendorf, Institut für Neuroimmunologie und Multiple Sklerose, Hamburg, Deutschland
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Christoph Heesen
- Universitätsklinikum Hamburg-Eppendorf, Institut für Neuroimmunologie und Multiple Sklerose, Hamburg, Deutschland
| Published: | March 20, 2019 |
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Outline
Text
Background/research question: A variety of therapeutic options (e.g. immunotherapies, lifestyle interventions and rehabilitation) are available for relapsing-remitting multiple sclerosis (RRMS). Besides coping with the diagnosis of multiple sclerosis (MS), patients have complex decisions to make (e.g. for or against a therapy). In addition to factual information, patient experiences (PEx) may support other patients in this decision-making. However, using PEx is controversial because they appear to be randomly generated, situation-related, possible inaccurate with respect to scientific evidence. For this purpose, systematic methods are necessary in order to obtain and analyse PEx. As there are no evaluated PEx for MS in Germany, we aim to create a website presenting PEx structured according to topics and illustrated by video, audio and text files. In a controlled study, we wish to evaluate whether PEx may help patients in their decision-making process for or against a disease modifying therapy (DMT).
Methods: A qualitative interview study is conducted with 50 persons with RRMS in Germany using maximum variation sampling. Interviews are based on a problem-centred interview guide, which was developed in assistance of a 6-members advisory panel (representatives of MS patients, researchers and neurologists). Data are analysed thematically according to Braun and Clarke using deductive and inductive categories.
Preliminary or expected results, outlook: Until now 34 interviews have been conducted with 23 women and 11 men (RRMS=79.4%, Secondary-Progressive MS=17.6%, unclear=2.9%, median age=48 years (min.=23, max.= 61)). Patients experienced at least one of the approved DMTs. 24 patients had been treated with at least one of the approved DMTs. The other 10 patients had made use of alternative therapies (e.g. cannabis, homeopathy). All patients had been involved in different types of lifestyle interventions (e.g. exercise and sports, relaxation and stress management, nutrition) and/or rehabilitation. Main themes were MS diagnosis, stigma, MS in everyday life and different therapeutic strategies. After completion, a website with PEx will be created which might facilitate the decision-making process for or against a DMT. In a pilot randomised controlled trial outcomes of the PExMS website such as knowledge, affective forecasting, and decision preparation will be measured.
Competing interests: Funding by Roche Pharma AG
