Abstracts

Rationale: The impact of epilepsy on the daily lives of people with epilepsy (PWE) must be understood and addressed in order to help PWE manage their epilepsy and improve their quality of life. The PAUSE to Learn Your Epilepsy provided personalized self-management (SM) education to PWE and incorporated one-on-one regularly scheduled video calls. While the main purpose of the video calls was to guide participants through the PAUSE program, the calls presented a unique opportunity to gain insight into the PWE’s daily life circumstances and challenges of living with epilepsy. Methods: PAUSE addressed the need for broad patient-centered and patient-specific education interventions that encompass the needs of all PWE using personalized tablet-based SM education to improve SM skills and quality of life for PWE. It included one-on-one support via video or telephone calls between the PWE and a PAUSE education facilitator. The calls were scheduled approximately weekly at the PWE’s convenience and a standardized script was followed for each call. PWE quotes, which are comments that are voluntarily offered by the PWE, are collected from the video calls and categorized by their primary underlying theme. Participants were also asked to complete the personal impact of epilepsy (PIES) questionnaire at enrollment and immediately following the SM education intervention. Results: Of the 113 consented and enrolled participants, 91 continued into SM education intervention. 73 participated in weekly one-on-one calls with an education facilitator. Calls lasted between 5 and 60 minutes, depending on how much guidance was necessary for the PWE to navigate their tablet and how much information the PWE chose to share with the educator. Comments about the impact of epilepsy on daily life are listed in Table 1; the negative comments mostly reflect pre-intervention perceptions and positive comments reflect perceptions following personalized SM education (post-intervention). Common themes of PWE comments included: Seizures, Epilepsy Management, Mood & Behavior, and Stigma. Comments about seizures focused on the affect seizures had on a participant’s life or the stress they lived with not knowing when a seizure would occur. Epilepsy management comments included troubles with medication adherence, medication side effects, and seizure tracking. Mood & Behavior comments were those regarding how epilepsy affected mood, the stress and anxiety of living with epilepsy, and limitations on activities. Comments about Stigma focused on how others viewed epilepsy and its impact on PWE, and the effects of these perceptions. Conclusions: In conclusion, improving SM skills can help assuage PWE’s fears and empower PWE to an active role their health through improved behaviors to manage seizures and reduce the impact epilepsy has on their daily life. Understanding specific concerns for individual PWE can help healthcare providers direct conversations, thereby improving epilepsy treatment and improving quality of life. Epilepsy SM education (including information on seizure tracking, social support, healthcare communication, and safety) may supplement medication management in addressing PWE concerns and fears about epilepsy. 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.