Background: While the social burden of epilepsy has been extensively studied, an evaluation of social media related to epilepsy may provide novel insight into disease perception, patient needs and access to treatments. The objective of this study is to assess patterns in social media and online communication usage related to epilepsy and its associated topics.
Methods: We searched two major social media platforms (Facebook and Twitter) for public accounts dedicated to epilepsy. Results were analyzed using qualitative and quantitative methodologies. The former involved thematic and word count analysis for online posts and tweets on these platforms, while the latter employed descriptive statistics and non-parametric tests.
Results: Facebook had a higher number of pages (840 accounts) and users (3 million) compared to Twitter (137 accounts and 274,663 users). Foundation and support groups comprised most of the accounts and users on both Facebook and Twitter. The number of accounts increased by 100% from 2012 to 2016. Among the 403 posts and tweets analyzed, "providing information" on medications or correcting common misconceptions in epilepsy was the most common theme (48%). Surgical interventions for epilepsy were only mentioned in 1% of all posts and tweets.
Conclusions: The current study provides a comprehensive reference on the usage of social media in epilepsy. The number of online users interested in epilepsy is likely the highest among all neurological conditions. Surgery, as a method of treating refractory epilepsy, however, could be underrepresented on social media.
Keywords: Epilepsy; Facebook; Seizure; Social media; Twitter.
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