Social media in epilepsy: A quantitative and qualitative analysis

Area of Science:

• Neurology
• Social Media Analysis
• Digital Health Communication

Background:

• Epilepsy's social burden is well-documented.
• Social media offers novel insights into disease perception, patient needs, and treatment access.
• Online platforms are increasingly important for health information dissemination.

Purpose of the Study:

• To assess patterns in social media and online communication usage related to epilepsy.
• To understand how epilepsy is discussed online.
• To identify patient needs and treatment perceptions from social media data.

Main Methods:

• Searched Facebook and Twitter for public epilepsy-related accounts.
• Analyzed data using qualitative (thematic, word count) and quantitative (descriptive statistics, non-parametric tests) methodologies.
• Examined 403 posts and tweets for thematic content and user engagement.

Main Results:

• Facebook hosted significantly more epilepsy accounts (840) and users (3 million) than Twitter (137 accounts, 274,663 users).
• Foundation and support groups dominated online epilepsy communities.
• Information on medications and misconception correction were the most common themes (48%), while epilepsy surgery was mentioned in only 1% of posts.

Conclusions:

• Social media usage related to epilepsy is substantial, potentially exceeding that of other neurological conditions.
• Online platforms are valuable resources for epilepsy information and support.
• Epilepsy surgery may be underrepresented in social media discussions, indicating a potential gap in online patient education and awareness.