Abstracts

Rationale: The daily concerns and experiences of people with epilepsy (PWE) must be understood and addressed to help PWE manage their epilepsy well. The PAUSE to Learn Your Epilepsy (PAUSE) self-management (SM) education program involves one-on-one video calls with PWE to assist them in using the Epilepsy Foundation's website. While the main purpose of the calls is to guide participants through the PAUSE program, the calls present a unique opportunity to gain insight into daily SM challenges of PWE. Methods: PAUSE is a personalized online SM education program with video call support. The calls are scheduled approximately weekly at the PWE's convenience and a standard script is followed. They last about 20-60 minutes, depending on how much assistance is needed by the PWE and how much information the PWE chooses to share during the call. PWE quotes (comments voluntarily offered by PWE) are collected from the calls and sorted by their primary underlying theme. Quotes are labelled as "positive" or "negative" based on whether they indicate a positive or negative impact of epilepsy on life. At enrollment, participants complete the Personal Impact of Epilepsy Scale (PIES). The ratio of the number of "positive" to "negative" PWE quotes (+/- ratio) is calculated per participant. Results: From 36 total calls from the 9 PWE analyzed thus far, 127 quotes have been collected and divided into 13 common themes. From most to least commonly mentioned, the themes are: Social Support & Relationships (SSR); Stress, Anxiety, & Mood (SAM); Stigma & Acceptance (SA); Medication & Side Effects (MSE); Emergencies & Injuries (EI); Seizure Knowledge & Management (SKM); Independence & Driving (ID); Thinking & Memory (TM); Diet & Exercise (DE); Sleep (SL); Work, School, & Staying Busy (WSSB); Relationship with Healthcare Team (RHT); and Feeling Useless (FUL). SSR, SAM, and SA were most common, with frequencies of 19%, 18%, and 16% of the total quotes respectively. Approximately 2/3 to 3/4 of the quotes within each of these three most common themes were "negative". The mean of the participant's +/- ratio was 0.54. Two participants had a ratio ?-1, while 7 participants had a ratio < 1. The participant with the lowest +/- ratio reported the highest PIES Mood & Social Sub-Scale score in the sample of 97 (higher scores reflect greater well-being). Conclusions: The most common themes were SSR, SAM, and SA, indicating that these may be significant SM topics to address with PWE. The overall low ratio of "positive" to "negative" quotes suggests that PWE experience a high number of negative thoughts, which has significance for mental health care and ways to motivate PWE to manage their epilepsy. The findings are limited by the small sample size. Therefore the relationship between PIES Mood & Social Sub-Scale scores and the +/- ratio for each PWE has not yet been determined. However, the finding of the lowest +/- ratio with the highest PIES Mood & Social Sub-Scale score suggests the importance of conversations with PWE to discover more about the impact of epilepsy on their lives. Funding: PAUSE is a project supported by the Univ. 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.