Abstracts

Rationale: The self-management needs of adults with epilepsy are relevant to reducing co-morbidity and improving adjustment to chronic illness/disability. Veterans with epilepsy report unique psychosocial needs different from civilian data. The Program for Active Consumer Engagement in Self-management (PACES) in Epilepsy was evaluated in urban and rural settings with adult civilians. RCT data showed immediate and longer-term effects on depression, epilepsy self-management and self-efficacy, and quality of life. Minimal self-management research to date has included Veterans. This presentation details Veteran-specific focus group research aimed at program content, format elements, and presentation adaptations for this sub-population with epilepsy. Methods: PACES was developed in a multi-phase, multi-method approach, via needs assessment surveys, focus groups, and RCT evaluation of an 8-week, professional and peer-lead, group-based program.PACES-V has evolved in 2 phases: (1) In-person focus group with n=4 (2 male; 2 female) VA Epilepsy Center of Excellence providers to review original PACES content and evaluate for changes relevant to Veterans;(2) Teleconference focus groups with n=10 (8 male; 2 females) Veterans to review PACES content and evaluate for changes to information and program format. Hypothesis: Content relevant to co-morbid TBI, PTSD, and epileptic vs. PNES events will be uniquely relevant, as will location and composition of self-management groups. Results: (1)   Provider themes specific to program content:Managing PTSDGender and relationshipsPNES and TBIEmployment and compensation benefitsCommunity participationMaximizing medical care and rights.Themes specific to program format were minimal and focused on gender and rank; reading level of the materials.(2)   Patient themes specific to program content:Recognizing PTSD (and anger) vs. stressBenefits and available medical treatmentsVeteran-specific resources and navigating the VHA systemDisclosure (employment, epilepsy, military)Alignment of examples with military cultureVisual representations vs. text.Themes specific to program format included single-gender groups due to military sexual/physical trauma. Teleconference approach was required to reach an adequate sample of patients.(3)   Quantitative ratings from Veterans as to PACES module relevancy and omitted content are pending and will be presented. Conclusions: PACES requires adaptation unique to the psychosocial and self-management needs of Veterans, and providers and Veterans aligned with aspects of relevant content (e.g., PTSD; employment concerns; resources and medical system navigation). Patients emphasized material that is concrete, relevant to their military and VA experience; with visual representations. Veterans did not raise needs for info about PNES despite elevated rates, and gender representation in the focus groups is a weakness. Challenges conducting in-person focus groups have implications for program delivery. Future directions involve modifying PACES-V and testing the adapted intervention in an RCT.  Funding: This presentation is a product of a Prevention Research Center supported by Cooperative Agreement Number U48DP005013 from the Centers for Disease Control and Prevention.