Abstracts

Rationale: The purpose of the POEM (Policy for Optimal Epilepsy Management) study was to assess the impact of a digital health management platform in a population of U.S. Veterans with epilepsy. The platform features a centralized, online hub with tools for community engagement, individualized disease tracking, and educational resources. The aim of the primary study was to assess improvement in patients' self-management and self-efficacy skills (reported previously). The secondary aims reported here focus on participant usage of the site and qualitative satisfaction with the experience. Methods: This was a pragmatic study in U.S. Veterans with a confirmed diagnosis of epilepsy that had not previously used the PatientsLikeMe online platform (www.patientslikeme.com). Participants were recruited through direct patient contact, mailing campaigns, and social media outlets. Study registration, validation, and informed consent were completed online. Eligible participants were introduced to the platform on a landing page and were invited to participate for at least six weeks. Survey metrics for patient self-management and self-efficacy were completed at the beginning and end of the study period. A patient satisfaction survey was also completed at the end of the six-week period. Usage data while on the site was collected electronically throughout the entire study period for all eligible participants. Results: A total of 249 Veterans with epilepsy consented, were validated, and joined the online platform. The mean age was 50.2 years, 80.7% were male, and 75.1% were non-Hispanic white, consistent with U.S. Veteran demographics. 92 participants (36.9%) completed the second survey at the end of six-weeks of participation (survey completers). Among these completers, participants logged in a median of 5 times (range 0-80) during the study period. 15.2% posted to a publicly-viewed discussion forum, 8.7% left a profile comment on another patient's individual page, and 29.4% sent a private message to another member of the PLM community. Data on user satisfaction are presented in Table 1 below. Notably, 48.9% reported that PLM gave them more or better control over their condition, and 43.5% responded that the experience helped them understand seizures. Conclusions: This first-time, pragmatic study of an online health management platform for epilepsy demonstrates effective engagement and usage in a cohort of Veterans with epilepsy. For some participants completing the study, there was self-reported evidence of perceived benefit on self-management practices. This suggests that this type of platform is valuable for some individuals with epilepsy, and further development and study of this concept should be supported.