Identify patient perspectives on medication adverse effects (AEs), mental health issues, and stigma associated with epilepsy.

Epilepsy is a neurological disease that can be considered invisible and associated with stigma, making it challenging to fully understand patient perspectives and unmet needs. While seizure freedom remains the primary treatment goal, we assessed additional unmet needs by investigating the patient experience from social media influencers and online platforms where patients discuss epilepsy.

This was a qualitative assessment of web-based platforms between 6/15/2024 and 7/30/2024. Patient perspectives and unmet needs were identified across three areas: antiseizure medication AEs, mental health, and stigma. Quotes and commentary were captured from people living with epilepsy through various media platforms including YouTube, TikTok, Instagram, Reddit, and Epilepsy Foundation community forums. We identified individuals and influencers who were most active within these forums, based on reach, followers, and impressions, and analyzed their posts, videos, and other media for information related to medication AEs, mental health, and stigma.

Across the various media platforms, we identified four most frequently discussed AEs from antiseizure medications: sleepiness, insomnia, mood changes, and cognitive effects. Patient comments captured the negative impact these AEs have on their quality of life. Patients also reported challenges with mental health and stigma associated with epilepsy, which pressured patients to remain silent about their struggles. The platforms and influencers we investigated play a crucial role in providing an environment where the epilepsy community can express their voice.

This assessment of social media and online forums provided a unique understanding of the perspectives and unmet needs that people with epilepsy are vocalizing outside of a clinical setting. Patients utilizing these forums shared their struggles with medication AEs, mental health, and stigma. Further research is warranted on how these online forums may impact patient education, quality of life, and health outcomes.