Rationale:
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 goal of epilepsy treatment, we aimed to assess additional unmet needs of people with epilepsy by investigating the patient experience directly from social media influencers and online platforms where patients discuss epilepsy. The intent of this qualitative research was to identify potentially overlooked challenges that patients experience. Our objective was to identify perspectives on medication adverse effects (AEs), mental health issues, and stigma associated with epilepsy. We also aimed to understand how the community utilizes online platforms to discuss these challenges and how they foster an open environment for those living with epilepsy.
Methods:
This was a qualitative assessment of the epilepsy patient experience as observed through various web-based platforms conducted between June 15, 2024 and July 30, 2024. We identified patient perspectives and unmet needs across three areas: antiseizure medication AEs, mental health, and stigma. We passively captured salient quotes and commentary from people living with epilepsy through various media platforms including YouTube, TikTok, Instagram, Reddit community forums, 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.
Results:
Across the various media platforms and influencers, it was clear that unmet needs persist beyond the goal of seizure freedom. Through comment sections of videos and posts, it was also apparent that there is a community of patients who share similar experiences. We identified four most frequently discussed AEs from antiseizure medications: sleepiness, insomnia, mood changes, and cognitive effects. Comments from patients captured the negative impact these AEs have on their quality of life (Table 1). In addition to AEs, patients also reported a range of challenges with mental health, and the stigma associated with epilepsy pressured patients to remain silent about their struggles (Table 2). The platforms and influencers we investigated play a crucial role in providing an environment where the epilepsy community can express their voice.
Conclusions:
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. By providing a means for patients to share their voice, these influencers and platforms foster an environment where patients can feel empowered to advocate for their health, and epilepsy education. Further research is warranted on how these online forums may impact patient education, quality of life, and health outcomes.
Funding:
Biohaven Pharmaceuticals