Abstracts

Rationale: Epilepsy self-management (ESM) among people with epilepsy (PWE) may be improved with increased awareness of ESM strategies and targeted communication between patients and healthcare providers (HCP). ESM helps PWE increase self-confidence and better cope with their disease. Despite advances in the field, web-based interventions for ESM are still limited. Web-based ESM applications have the potential to combine the tailored approach of face-to-face clinical interventions with the scalability of public health interventions. The Management Information Decision Support Epilepsy Tool (MINDSET2.0) was redesigned as an internet accessible, responsive cross-platform version of MINDSET with inclusion of decision-support algorithms to provide tailored recommendations on appropriate MEW programs and prioritized social determinants for PWE. MINDSET2.0 can be used by patients online, remotely, or in a clinical setting and facilitates healthcare providers in assisting patients to periodically assess, maintain, and/or improve their ESM. The purpose of this longitudinal study is to test the efficacy of using MINDSET over two clinic encounters. Visit 1 (baseline) results are reported.


Methods: Five clinics in the Epilepsy Foundation Central & South Texas (n=3) and the Banner University Medical Center (n=2), recruited eligible patients who were randomly assigned to a treatment (MINDSET 2.0 plus usual care) or comparison (usual care only) condition. All participants provided demographic information and embedded scales within MINDSET including an adapted DiIorio ESM scale, NDDI-E (depression), QoLIE-10 (quality of life), and the Health Leader social determinants inventory. Participants in the treatment (MINDSET2.0 + Usual care) condition also selected three ESM behavioral goals and related strategies and received a printed Action Plan to discuss with their HCP. Participants in the control (usual care) condition did not receive feedback regarding ESM behavior improvement, did not select goals and strategies, and did not receive an Action Plan.


Results: The baseline sample was 110 patients (10 in TX, 100 in AZ) were randomly assigned to treatment (n=60) and control (50) conditions. In the combined cohort, 31% reported a seizure in the past 30 days. Quality of life overall was assessed on a scale between 1-10 (10 best possible). (m=7.5, SD=1.88). The top three most frequently reported social needs were social isolation (21.82%), food insecurity (20.91%), and financial strain (13.64%). Of those in the treatment group, 58% (n=35) were recommended to the HOBSCOTCH program indicating cognitive issues and 26% (n=16) were recommended to the UPLIFT program indicating depressive symptoms.


Conclusions: Anecdotal evidence from participants and HCPs supports previous findings that MINDSET2.0 raises patient awareness of ESM (e.g., seizure triggers, AED side effects), prompts greater patient-provider discussion and pragmatic guidance on linkage to ESM training and social services tailored to patient needs.

Funding: This research was funded by a Special Interest Project Grant (5 U48DP006413-04-00 SIP19 – 003) from the Centers for Disease Control and Prevention (Managing Epilepsy Well Collaborating Center).