Authors :
Presenting Author: Refugio Sepulveda, PhD – University of Arizona
Ross Shegog, PhD – UTHealth Houston School of Public Health
Robert Addy, PhD. – UTHealth Houston
Katarzyna Czerniak, MLA, MPH, PhD – UTHealth Houston School of Public Health
Kim Martin, BA – Epilepsy Foundation Central South Texas
Myrka Torres, MD – University of Arizona
Christine Zuniga, BS, MSN – Epilepsy Foundation Central & South Texas
David Labiner, MD – University of Arizona
Rationale:
Epilepsy self-management (ESM) interventions are important to promote quality of life among people with epilepsy (PWE). Increased awareness of ESM strategies and targeted communication between patients and healthcare providers (HCPs) can improve ESM. 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 (MINDSET), an evidence-based decision support tool, was redesigned as an internet-accessible, responsive, cross-platform version of MINDSET with the inclusion of decision-support algorithms to provide tailored recommendations on appropriate MEW programs and prioritized social determinants for PWE. MINDSET2.0 (available in English and Spanish) can be accessed remotely online or in a clinical setting and facilitates HCPs in assisting patients to periodically assess, maintain, and improve their ESM. The purpose of this study was to assess the experience of PWE using MINDSET2.0 in neurology clinic visits. Methods:
This study used a Qualitative Descriptive (QD) framework to provide a rich and straightforward description of patients’ subjective experience using MINDSET2.0. Participants were enrolled in the intervention group of a larger parent study (RCT) to assess the efficacy of MINDSET2.0 among PWE. The purposive, convenient, criterion-based sample for this qualitative analysis consisted of 50 patients who agreed to participate in a semi-structured interview at the end of the larger RCT. The RCT was conducted from August 2023 through May 2025. Spanish and English-speaking patients (n = 110) with epilepsy in Arizona (n = 100) and Texas (n = 10) were randomly assigned within five neurology clinics to a treatment (MINDSET 2.0 plus usual care; n = 60) and comparison (usual care only; n = 50) condition.Results:
Patient demographics, epilepsy condition, and ESM behavioral characteristics were representative of the intervention group. Study participants were mostly Hispanic (83%), their mean age was 36 years of age, mostly female (64%), and most of the participants reported having had one or more seizures per month (31%). Of those in the treatment group, 58% (n=35) presented with cognitive issues, and 26% (n=16) with depressive symptoms and were, respectively, recommended to participate in the HOBSCOTCH and UPLIFT programs. The QD framework revealed five ESM themes, including: (1) Increased Awareness and Empowerment; (2) Improved Communication with HCPs; (3) Feasibility, Usability, and Individualization; (4) Seizure Control and Quality of Life; (5) Motivation and Engagement.Conclusions:
Findings from this qualitative study were consistent with previously reported results from the early MINDSET version. MINDSET 2.0 contributed to a positive patient experience when added to the clinic encounter. This study suggests that digital applications can provide utility while enhancing the quality of patient’s experience.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).