Abstracts

Rationale: The self-management needs of adults with epilepsy are relevant to reducing co-morbidity and facilitating adjustment to chronic illness and disability. The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy was developed in an urban setting with an adult civilian sample. PACES has since been adapted for use and evaluated in rural communities. RCT data showed immediate and longer-term effects on depression, epilepsy self-management, epilepsy self-efficacy, and quality of life. Minimal self-management work to date has included Veterans. Methods: PACES was developed in 3 phases: (1) Mail survey to adult epilepsy patients (n=200) in the Northwest and South asking respondents to (a) rate problems with work, independent living, socializing, epilepsy, emotions, cognition, health and well-being, and medical care; and (b) rank self-management intervention format preferences (location, length, time of day, leadership model). Response rate 61%. (2) Focus groups (4 groups; n=24) (a) validated survey content for unique sub-populations (viz., rural-dwelling adults); and (b) identified requisite changes to PACES, for extension of program beyond the academic medical center setting. (3) RCT to test PACES (n=108). Based on data from (1) and (2) above, the 8-week groups are co-lead by a psychologist and trained peer with epilepsy; comprised of 6-8 adults with epilepsy, and meet once peer week at a hospital or by teleconference for 75 minutes. Along with cognitive-behavioral psychoeducation, goal setting and attainment scaling is used with the treatment group. Outcome measures include the Epilepsy Self-Management Scale, Epilepsy Self-Efficacy Scale, QOLIE-31, PHQ-9, and GAD-7; administered at baseline, 8 weeks, and 6 months. The focus of this presentation is to detail the background, rationale, and results of Veteran-specific focus group research aimed at program content needs, format elements, and presentation adaptations for this unique sub-population with epilepsy. We hypothesize that content relevant to co-morbid traumatic brain injury, post-traumatic stress disorder, and epileptic vs. psychogenic non-epileptic events will be relevant, as will the location and composition of self-management groups. Results: Data collection will occur at a VA Epilepsy Center of Excellence. Up to 3 focus groups (n=30) are anticipated to reach content saturation. Data for PACES content changes and outcomes measures will be presented, along with information as to a Veteran-specific RCT (e.g., reading level adjustment to materials; addition of modules related to co-morbid disabilities, etc. Conclusions: PACES is a consumer-driven, psychoeducational intervention for epilepsy self-management, and has been promising from multiple perspectives, particularly regarding disability management. Top-down approaches have been less successful at participant engagement and lack longer-term follow-up relevant to sustained cognitive-behavioral change. Funding: This presentation is a product of a Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement NumberU48DP005013from the Centers for Disease Control and Prevention.