Authors :
Presenting Author: Bijoya Basu, BS – Case Western Reserve University School of Medicine
Xiaoming Zhang, PhD – Pediatric Epilepsy Section, Epilepsy Center at the Cleveland Clinic Neurological Institute, Cleveland, OH, USA
Tatiana Falcone, MD – Cleveland Clinic
Deepak Lachhwani, MD – Cleveland Clinic
Elia Pestana Knight, MD – Cleveland Clinic
Maksim Parfyonov, MD – Pediatric Epilepsy Section, Epilepsy Center at the Cleveland Clinic Neurological Institute, Cleveland, OH, USA
Rationale:
Rare genetic epilepsies are often diagnosed in infancy and place significant emotional and logistical burdens on families. Geographic dispersion, limited clinical expertise, and scarce resources frequently leave caregivers without adequate support. Increasingly, caregivers turn to social media for connection, information, and advocacy. However, the role of these platforms in shaping caregiver experiences and disease management remains understudied.
Methods:
We conducted a cross-sectional, web-based survey of 228 caregivers of individuals with rare genetic epilepsies. The survey included multiple-choice and open-ended questions capturing demographics, clinical details, and patterns of social media engagement. Participants were recruited globally via 36 rare epilepsy advocacy and social media groups. We then looked at correlations between social media engagement and health care utilization. Qualitative responses were analyzed thematically.
Results:
Caregivers represented 25 countries across 5 continents (Figure 1). Affected individuals ranged in age from 1 to 30 years, with a mean age of 3.4 years. The cohort was 48% female and 44% male. Facebook and Instagram were the most commonly used platforms. A majority of respondents reported using social media at least once/month. Caregivers who post actively reported fewer hospital stays over the past year than more infrequent posters (0.77 vs 1.18 admissions; p = 0.048) and showed a trend toward fewer trips to the emergency department (0.83 vs 1.33 visits; p = 0.08) (Table 1) .
Qualitative analysis revealed three dominant benefits: (1) emotional support and reduced isolation; (2) access to caregiver-derived medical knowledge and practical guidance; and (3) opportunities for research and advocacy involvement. However, caregivers also cited concerns about misinformation and a lack of professional oversight. Many expressed a desire for more clinician engagement in online communities.
Conclusions:
Social media plays a vital and multifaceted role in the lives of caregivers of children with rare genetic epilepsies offering both emotional and informational support in the face of systemic gaps. There is a clear correlation between the longer these individuals have been in these groups and how they utilize healthcare systems. These findings also underscore the need for structured collaboration between medical professionals and online communities to enhance the accuracy and safety of peer-shared information, and to recognize social media as a legitimate tool in rare disease care.
Funding: none