Abstracts

Rationale: Epilepsy affects 6:1000 youth in the United States; however, limited research exists on psychoeducational interventions for youth and family. Studies assessing such interventions revealed an increase in youth’s self-efficacy for managing seizures; quality family communication; positive attitude toward diagnosis and caregivers’ emotional health.1 Although the greatest need for information is within 3 months of diagnosis, this need remained high at 1 and 2 years’ post diagnosis (33-50% and 40% respectively).2 Caregiver confidence around epilepsy management is related to better quality of life in youth, while elevated helplessness predicted lower quality of life in youth.3,4 “Epilepsy Education Day” aimed to: 1) provide psychoeducation to caregivers and youth about epilepsy and recommended treatments; 2) increase knowledge about seizure first aid and detection devices, 3) decrease stigma; and 4) promote awareness of community resources.

Methods: Youth aged 14 years and up with a diagnosis of epilepsy and their caregivers (i.e., parents, school nurses, psychology trainees) were invited to participate in a half-day virtual epilepsy education day at Children’s Hospital of Philadelphia (CHOP) via flyer and email distributions. Clinicians from CHOP and community (i.e., neurology, genetics, psychosocial, and epilepsy community foundation) gave presentations on several topics, including: epilepsy diagnosis and treatment options; genetic testing; psychosocial concerns and treatment options; and community and school resources. Participants completed pre- and post-surveys in RedCap to capture demographic information, feedback, and assess their confidence and understanding in epilepsy management, psychosocial-related concerns, and community support and resources (Table 1).

Results: 144 individuals registered for the virtual education day and 58 attended the event. Most attendees identified as family members of a person with epilepsy (89.7%). Before the event, 41.3%-72.4% attendees shared that they were “somewhat” to “very” knowledgeable about epilepsy, treatments options, psychosocial concerns, and related treatments and resources. 57.9% attendees were “not” or “slightly aware” of community resources for epilepsy. Following the event, increased attendees’ confidence and knowledge in epilepsy, treatment, and resources were noted (87.6%-100%). Most attendees stated that they would recommend the virtual epilepsy education day to others.

Conclusions: Virtual epilepsy education day is an effective way to provide education on epilepsy management and resources for psychosocial functioning. Attendees reported increased knowledge and confidence in epilepsy management and related support and resources. An immediate next step includes increasing virtual education day frequency to twice-yearly to provide tailored information and support based on participant feedback and assessing the potential association between attendance of virtual education day and frequency of health care utilization for epilepsy.

Funding: N/A