Abstracts

Rationale: People with epilepsy (PWE) are faced with many challenges. Studies show that PWE are more likely to experience social isolation, underemployment, lower income, transportation barriers, and have a higher prevalence of psychiatric comorbidities. Past studies have also shown that a gap exists among PWE and knowledge of, access to, and acceptability of needed resources that can be addressed by clinicians providing linkages to local agencies and community-based organizations. PWE often rely on healthcare providers as the sole source of information regarding health-related resources, however health outcomes may be improved through access to additional community-based resources. The purpose of this study is to examine how community partnerships and education can be beneficial to the epilepsy community.

Methods: The Epilepsy Community Advisory Board (E-CAB), a group of PWE, healthcare providers, caregivers, epilepsy researchers, and epilepsy advocates, hosted Epilepsy Community Resource events, in-person and virtually. Some topics included Epilepsy 101 and Treatment, Mental Health, Employment and Employee Rights, Epilepsy Self-Management, and Seizure First Aid and Recognition Certification Training. Some local community organizations represented included Metropolitan Atlanta Rapid Transit Authority, Canine Assistance, disABILITY Link, and National Alliance on Mental Illness. We collected evaluation surveys after each event to measure the overall satisfaction with the events and whether new information was learned was determined. Potential health outcome benefits were explored based on self-reported responses.

Results: A total of 326 participants attended 5 different events (in-person: n = 120, virtual: n = 206) and 149 completed evaluations. Over 87.2% of participants stated they were very satisfied with the information received during the event. Of the 103 that attended the virtual events, 68.9% strongly agreed, 30.1% agreed, and 1% strongly disagreed that they were able to learn new information. Additionally, open-ended comments described the sessions as “informing” and “educational.” Feedback provided evidence that the Epilepsy Community Resource events were beneficial to the participants.

Conclusions: Most participants were satisfied with the events and learned new information. The new information gained was made possible through community partnerships that offer resources for PWE. These resources included employment opportunities for PWE, mindful meditation skills for dealing with stress, depression, and anxiety, and mental health support groups. Overall, these resources and benefits can potentially improve clinical and self-management outcomes in PWE. Community partnerships with local organizations are worth exploring in order to improve the quality of life in PWE.

Funding: Please list any funding that was received in support of this abstract.: This study was supported in part by funding from the CDC #U48DP005042 and NIH #5P30DK111024-05.