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Mind the Gap! What do people with epilepsy want to know?
Sarah Jones1, Heather Angus-Leppan2
1Epilepsy Initiative Group, Department of Neurosciences, Royal Free London NHS Foundation Trust, Pond Street, London NW32QG, United Kingdom; Royal National Orthopaedic Hospital, Brockley Hill, Stanmore HA7 4LP, United Kingdom.
Epilepsy & Behavior : E&B
|December 13, 2025
Summary
People with epilepsy ask many questions not answered by verified sources, often about life limitations. This research highlights a critical need for accessible, evidence-based information to support autonomy and quality of life.
Area of Science:
- Neurology
- Public Health
- Information Science
Background:
- Limited research exists on epilepsy patient questions and information sources.
- Current information sources include websites, AI, and peer support.
Purpose of the Study:
- To identify and categorize questions asked by people with epilepsy.
- To assess the availability of answers from verified sources.
- To understand the emotional content and patterns in patient-generated questions.
Main Methods:
- Social media (X) was used to collect questions from people with epilepsy.
- An unsupervised topic modeling algorithm themed the aggregated questions.
- Thematic qualitative analysis examined emotional content and response patterns.
Main Results:
- 2752 natural language responses were collected from Europe, North America, and Australia.
- 74% of epilepsy-related questions remain unanswered by verified sources.
- 83% of questions focused on restrictions and limitations in daily life.
Conclusions:
- A significant gap exists between epilepsy patient concerns and accessible, accurate information.
- Unanswered questions may lead patients to unverified information sources.
- There is a need for evidence-based answers focusing on autonomy and quality of life for people with epilepsy.
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