To describe the available literature on social media and epilepsy 

Social media has become omnipresent in our daily lives, with an exponential increase in its influence on the healthcare sector over the past decade. This rapid growing brings up a new era of potential tools to improve epilepsy care, as well as new challenges and ethical implications never addressed before. Although widespread, few studies specifically analyzed the intersection between social media and epilepsy care.   

A literature review was completed using PubMed. Search terms utilized were (social media) AND (epilepsy). Inclusion criteria included articles in English addressing the use of social media tools on healthcare monitoring and delivery of people with epilepsy and their caregivers. Articles that used social media for research recruitment only were excluded from the analysis. 

We reviewed 188 manuscripts.  55 of them fulfilled the inclusion criteria. 36 of them were content analysis. Among social media tools, YouTube was the most studied for people with epilepsy (14 studies), followed by Facebook (12), X (Ex-Twitter) (8), and TikTok (6). Most of the content analysis studies focused on the accuracy of epilepsy information available on social media. Most of the available information was perceived as poorly accurate.  Two studies focused on the use of large language models in social media trends to identify the needs of people with epilepsy. Only two studies focused on the ethical aspects of social media on epilepsy care. 

Social media use among people with epilepsy could provide helpful insights into their specific needs, potentially improving patient-centered care at faster rates. However, information available on social media on epilepsy is often not reliable, possibly influencing delays in treatment and spread of stigma and misinformation. Given its dimension, the complex interplay between epilepsy and social media should be prioritized as a research topic.