Patient Experiences of Multiple Sclerosis (PExMS)
Patient Experiences of Multiple Sclerosis (PExMS)
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.
A variety of management options (e.g. immunotherapies, lifestyle interventions, and
 rehabilitation) are available for people with relapsing-remitting multiple sclerosis. Besides
 coping with the diagnosis, people with multiple sclerosis have to make complex decisions such
 as deciding about immunotherapies. In addition to factual information, reports of patient
 experiences (PEx) may support patients in decision-making. The added value of PEx in
 decision-making is not clear and controlled studies are rare. Therefore, systematic methods
 are necessary in order to develop and analyse PEx. As there are no evaluated PEx for multiple
 sclerosis in Germany, the investigators are currently creating a website presenting PEx
 structured according to topics and illustrated by video, audio and text files.

 The investigators aim to evaluate whether PEx may help people with multiple sclerosis in
 their immunotherapy decision-making processes.

 This project will follow the Medical Research Council framework for development and
 evaluation of complex interventions. After the development of a website with PEx, a
 randomised controlled pilot trial will be conducted in 2-3 multiple sclerosis centres,
 clinics or rehabilitation centres including 55 people with relapsing-remitting multiple
 sclerosis and accompanied by a process evaluation.

 Participants will be randomly assigned either to i) an intervention group with a four weeks
 access to an evidence-based patient information resource and the PExMS-website as an adjunct
 or to ii) the control group with access to evidence information alone.

 A 6-members advisory panel involving representatives of people with multiple sclerosis,
 researchers, and neurologists, who accompany the whole project will mentor this pilot RCT.
 The ethical committee of the Hamburg Chamber of Physicians approved the study protocol.
Inclusion Criteria:

 -  persons with relapsing-remitting multiple sclerosis

 -  being ≥18 years old

 -  considering immunotherapy for mild/moderate or (highly) active courses of the multiple
 sclerosis

 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