Abstracts

Rationale: Living with epilepsy is a daunting task due to the complexities of seizures, subsequent social and economic challenges, cultural influences, and its impact on independent living. To manage the effects of epilepsy on daily life, people with epilepsy (PWE) must be skillful and confident in managing their condition. This emphasizes a critical need for a self-management (SM) education program that is integrated with a medical care plan and addresses a variety of areas including seizure and medication management, safety, well-being, and independent living. Additionally, an effective self-management education program must be tailored to the specific needs of a given PWE. Methods: PAUSE to Learn Your Epilepsy, is a Centers for Disease Control and Prevention Managing Epilepsy Well (MEW) Network collaborating center at the University of Illinois at Chicago (UIC). It is designed to evaluate the effectiveness of an internet-based personalized epilepsy SM education program using the Epilepsy Foundation's publicly available website. Additionally, PAUSE aims to evaluate the effect of SM educational resources on improving the lives of the most vulnerable adult PWE from underserved populations. The study combines the concept of collaborative care with a tailored SM education approach. The study framework includes baseline assessments, 10-12 weeks of individualized epilepsy SM education with video conferencing support, and 4 follow-up assessments occurring up to 1 year out. Baseline and follow-up assessments utilizing validated instruments will examine changes in epilepsy related health measures including self-management, self-efficacy, outcome expectancies, personal impact of epilepsy, medication adherence, and quality of life. PAUSE is being assessed in clinical and community settings. Recruitment is ongoing, aiming for 100 participants each from an epilepsy clinic and from the community. Results: Preliminary data presented are for PWEs participating from the clinical setting. Sixty percent of 60 study eligible PWEs referred by the providers consented to participate. 26 (72 %) of 36 consenting PWEs met inclusion/exclusion criteria and provided baseline assessments. Demography and selected baseline characteristics are presented in the Table. Longitudinal data collection flow is presented in the Figure. Conclusions: The majority of our sample includes racial minority, low-income, and undereducated persons. Despite a long (5+ years) history of seizures, it seems that relatively few PWE have made use of resources available to support their epilepsy SM. The study has great public health potential to provide necessary tools and data critical to implementation of self-management of epilepsy in a general population through specialty clinics and community-based organizations. A key advantage is the ability to tailor self-management to individual PWE needs using an electronic tablet device. Funding: PAUSE is a project supported by the University of Illinois Prevention Research Center and the Centers for Disease Control and Prevention's Managing Epilepsy Well (MEW) Network. The project is administered by the Institute for Health Research and Policy of the University of Illinois at Chicago, under CDC cooperative agreement no. U48-DP005010.