Abstracts

Rationale: Health care providers routinely educate and counsel patients on epilepsy and related health issues. However, during clinical encounters providers spend time on medical management and have insufficient time to fully address patient-specific epilepsy self-management (SM) education. An Institute of Medicine 2012 report, “Epilepsy across the Spectrum,” emphasized the “development, evaluation, replication, and expanded use of self-management and educational programs” to improve health outcomes and quality of life for people living with epilepsy (PWE). Introducing and encouraging access to SM education can address these gaps, ultimately transferring “ownership” of care from provider to patient and facilitating shared decision-making. The PAUSE to Learn Your Epilepsy study examined the effectiveness of personalized SM education for PWE from underserved populations. Methods: The PAUSE study provided personalized SM education to adult PWE via mobile tablet technology and included support via one-on-one calls with a PAUSE education facilitator. Self-reported demographic characteristics were collected at baseline. Post-intervention assessments of the impact of the personalized SM education include epilepsy SM skills & behaviors (AESMMI-65), self-efficacy, outcome expectancy (EOES), and quality of life (QOLIE-10). Z-scores were created using mean and standard deviation of respective measures from published reports. Preliminary data for the PAUSE study are presented here; follow-up data collection is ongoing. Results: Study population includes 36 PWE for whom baseline, Follow-up 1, and Follow-up 2 data is currently available (Figure 1). PWE who completed up to Follow-up 2 had similarly diverse sociodemographic characteristics as all PAUSE participants: 56% women, 39% non-Hispanic black, 19% Hispanic, and 28% white. Notably a smaller proportion reported yearly household income of at least $25,000 or used private health insurance. A smaller percent of PWE who completed through Follow-up 2 visited epilepsy.com at least a moderate amount for information. Graphical representation of changes in SM skills & behaviors at each of the three time points is shown in Figure 2. Improvement of epilepsy SM skills & behaviors in all domains following SM education has been noted. Conclusions: Participants showed meaningful improvement following SM education; PWE were able to communicate better with their healthcare providers, had improved seizure tracking, better stress management, and increased safety practices. Treatment management and medication adherence at baseline were also both very far below the mean as reported previously and improved following SM education. With completion of follow-up data collection, PAUSE may be able to show success in implementing SM education in epilepsy clinics to improve the lives of PWE. This program is cost-effective and can be easily disseminated in epilepsy subspecialty clinics. Funding: This is a product of a Health Promotion and Disease Prevention Research Center and a Managing Epilepsy Well Collaborating Center supported by Cooperative Agreement Number 5 U48DP005010-05 from the Centers for Disease Control and Prevention. The findings and conclusions presented here are those of the author and do not necessarily represent the official position of the Centers for Disease Control and Prevention.