Patient Experiences of Multiple Sclerosis (PExMS)

Summary

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.

Conditions

• Multiple Sclerosis
• Multiple Sclerosis, Relapsing-Remitting
• Patient Engagement
• Self Efficacy

Interventions

BEHAVIORAL

PExMS and DECIMS-Wiki

The intervention consists of an information provision on immunotherapies as a combination of factual and experiential information. PExMS is a multimedia website providing patient experiences with MS in everyday life and with therapies illustrated by video, audio and text files of 48 persons with multiple sclerosis. The development of the intervention followed largely recommendation for standardised qualitative research provided by international DIPEx (Database of Individual Patients' Experience of illness) association, which use standardised qualitative research methods to provide 'balanced' information from original interview data. Data for the website was generated in a qualitative interview study with relapsing remitting multiple sclerosis patients across Germany. DECIMS (Decision coaching in MS)-Wiki (www.wiki2.kkn-ms.de) is an evidence-based patient information website focusing multiple sclerosis immunotherapies.

BEHAVIORAL

DECIMS-Wiki

The active comparator is DECIMS-Wiki, which is an evidence-based online information platform. It is considered to be excellent factual information about immunotherapies for multiple sclerosis.

Sponsors & Collaborators

• Marianne-Strauss-Klinik, Berg, Germany

  collaborator UNKNOWN

• Gesundheitszentrum St. Johannes Hospital, Bonn, Germany

  collaborator UNKNOWN

• University Hospital Cologne, Cologne, Germany

  collaborator UNKNOWN

• Rechts der Isar Hospital, Munich, Germany

  collaborator UNKNOWN

• University Medical Center Schleswig-Holstein, Kiel, Germany

  collaborator UNKNOWN

• Universitätsklinikum Hamburg-Eppendorf

  lead OTHER

Principal Investigators

• Christoph Heesen, Prof. Dr. · Universitätsklinikum Hamburg-Eppendorf

Study Design

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

QUADRUPLE

Model

PARALLEL

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2024-01-01

Primary Completion

2025-12-31

Completion

2025-12-31