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Patient Preferences Towards Plain Language Resources During their Multiple Sclerosis Journey: A Qualitative Interview
Avishek Pal1, Bernice Simone Elger2,3, Samuel S Allemann4
1Institute for Biomedical Ethics, University of Basel, Bernouillistrasse 28, 4056, Basel, Switzerland. Avishek.pal@unibas.ch.
The Patient
|March 19, 2026
Summary
Patients with multiple sclerosis seek plain language resources (PLRs) for evolving needs throughout their disease journey. Accessible, detailed PLRs, including those for caregivers, are recommended to improve self-care and shared decision-making.
Area of Science:
- Health Literacy
- Information Science
- Patient Experience
Background:
- Plain language resources (PLRs) enhance health literacy for patients and the public.
- Understanding patient preferences for medical information is crucial for effective communication.
Purpose of the Study:
- To explore the plain language medical information-seeking preferences and needs of patients with multiple sclerosis (MS).
- To identify motivators and deterrents in seeking information and to provide recommendations for patient-friendly PLRs.
Main Methods:
- Qualitative interview study with 14 patients diagnosed with multiple sclerosis in Switzerland.
- Thematic analysis guided by Wilson's revised information behavior model.
Main Results:
- Information needs evolve from pre-diagnosis (symptoms) to post-diagnosis (prognosis, treatment).
- Motivators include self-awareness and curiosity; deterrents involve loss of identity.
- Patients prefer accessible PLRs with sufficient detail, citing sources, and desire resources for caregivers. Healthcare practitioners and reputable websites are trusted sources.
Conclusions:
- Novel insights into MS patient information-seeking behaviors in Switzerland.
- Tailored, accessible PLRs are essential for patient self-care and shared decision-making.
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