An Online Epilepsy Self-Management Tool for Patients With Epilepsy: A Formative Usability Study

Epilepsy is a serious chronic neurological condition with no permanent cure. Continual self-management is important to mitigate seizure frequency and optimize quality of life in people with epilepsy who have greater disparities in accessing epilepsy care. The Management Information & Decision Support Epilepsy Tool (MINDSET [UTHealth, University of Arizona, and Radiant Digital]) was developed to enhance accessibility to epilepsy self-management (ESM) assessment and treatment. The purpose of this formative usability pilot study was to assess the user experience and functionality of MINDSET 2.0, an enhanced cross-platform online version of MINDSET, among a sample of patients with epilepsy prior to feasibility testing within neurology clinic settings.

MINDSET 2.0 comprised an updated cross-platform architecture for easier accessibility and added quality of life, cognitive function, and social determinants assessments. User experience and functionality were assessed in January 2022. Six patients with epilepsy in Texas (n=4) and Arizona (n=2) participated in individual online usability sessions, completing a sociodemographic survey, accessing all components of MINDSET, and then completing usability rating scales and an exit interview. Logical inconsistencies in embedded algorithms were examined for the usability sample and in user case challenges to ensure functional fidelity.

Patients reported low adherence to ESM behaviors in each of the management domains. More than 80% of patients agreed that MINDSET 2.0 was acceptable, easy to use, likable, credible, of appropriate duration, and motivationally appealing. Patients agreed that the program helped them think about and manage their epilepsy more carefully, and that it improved decision-making between them and their health care providers (100%). Patients provided lower ratings (≤50%) and reported the greatest number of difficulties with their understanding of how to select goals and strategies, and develop an action plan due to constraints of item response options leading to user confusion. An inconsistency in algorithm branched logic was identified that related to translating depression scores into recommendations for depression self-management programming.

The results replicated usability findings from earlier versions of MINDSET but also catalyzed adjustments to user survey response options and algorithm repair. The value of the formative user experience functionality assessment was demonstrated to ensure a high-fidelity program prior to feasibility testing in neurology clinic settings.