Abstracts

Rationale: Rationale The epilepsy self-management (ESM) program HOBSCOTCH (HOme Based Self-Management and COgnitive Training CHanges Lives) leverages a telehealth platform to enhance accessibility for participants. Given its reach to national and international populations, there is need for program evaluation and quality improvement efforts to gauge its broader health impact. We employed a Community Engagement Studio (CES) to gather experiential insights from former HOBSCOTCH participants and engaged HOBSCOTCH Cognitive Coaches in a second CES. We aimed to refine our processes to maximize program delivery and promote shared decision-making (SDM). Additionally, CES data could provide a view on challenges hindering equitable access to ESM.


Methods: Methods Ten patients who completed HOBSCOTCH were invited to join a 1.5-hour virtual CES session. Seven Cognitive Coaches were participants in a second 1.5-hour virtual CES. A discussion guide with key questions specific to CES cohort and a slide presentation with context about HOBSCOTCH were utilized by a neutral facilitator to lead both CES cohorts in sharing lived patient experiences. The facilitator led discussions and covered topics related to user/facilitator experience, SDM, and SDoH as accessibility barriers to program participation and completion. A scribe documented CES conversations and crafted summaries which were used to create recommendations for program delivery enhancements (Table 1).


Results: Results Patients highlighted HOBSCOTCH’s ability to address individual needs and suggested flexibility in frequency and session length to further individualize sessions; and expressed interest in access to more self-directed resources (videos, App) to extend learning. Participants shared barriers to access: technology, childcare, mental health challenges, and a lack of awareness epilepsy providers had about HOBSCOTCH. Coach experiences highlighted similar SDoH, inclusive of family stressors, financial hardships, housing instability, technology access and familiarity as program access barriers. Coach experiences revealed the importance of SDM in building trust, validating participant experience and facilitating sessions. A greater awareness of mental illness severity, and flexibility of delivery for participants with higher disability was suggested to enhance user experience. A face-to-face option was promoted as a desired delivery modality in specific cases (Table 2).


Conclusions: Conclusion Comparative CES extracted insights from patients and Cognitive Coaches. Recommendations stemming from CES cohorts offered valuable QI directives. Both cohorts emphasized the importance of SDM in current delivery methods and advocated for its continued use and emphasis in program delivery. Additionally, they identified similar SDOH as obstacles to program access and completion. These insights are pivotal for shaping program interventions to empower participant autonomy and ensure equitable access to ESM as part of routine epilepsy care.


Funding: Funding: n/a