Center for Health Promotion and Prevention Research

Project Overview

The Management Information & Decision Support Epilepsy Tool Plus (MINDSET) is a web-based bilingual program designed to improve patient-provider communication to enhance self-management of patients with epilepsy (PWE) through tailored behavioral goal selection and action plan development.

The Management Information & Decision Support Epilepsy Tool Plus (MINDSET) is a web-based program available in English and in Spanish that is accessible on any computer, tablet, or smartphone with an internet connection. The program’s main objective is to improve patient-provider communication to enhance self-management of people with epilepsy (PWE) through tailored behavioral goal selection and action plan development. MINDSET is designed for use during regular patient clinic visits and comprises three sections: My Epilepsy, My Goals, and My Plan, which are completed in that order.

The “My Epilepsy” section is comprised of a detailed survey in which the PWE is prompted to answer a set of questions covering the three domains of epilepsy self-management (ESM): seizure management (the patient's recent seizure history (including frequency and type) and seizure self-management behaviors), medication management (current anti-seizure medication prescriptions, medication adherence, adherence barriers, side effects, and medication self-management behaviors), and lifestyle management (including mood, social life (such as sexual relationships, child care, employment, and driving), physical activity, safety, record keeping, social support, cognitive function, general quality of life, and social determinants (such as food insecurity, lack of housing, lack of companionship, and financial issues)).

Once the “My Epilepsy” survey is complete, the PWE moves to the “My Goals” section where they are shown their risk behaviors in each domain based upon their answers provided in the “My Epilepsy” survey. The PWE is then asked to select up to three goals (one from each domain) to work on by their next clinic visit. For each selected goal and behavior, the PWE is prompted to choose from a list of strategies they will use to meet the goal, to indicate how confident they are that they can achieve the goal, and to list any perceived barriers to success. If there is no flagged behavior in the domain, the PWE does not need to select a goal for that domain. The PWE is then asked about any past experience with three specialized epilepsy self-management programs developed by CDC’s Managing Epilepsy Well (MEW) Network: PACES, UPLIFT, and HOBSCOTCH. The goal of PACES is to increase the medical, psychosocial, and community adjustment of adults with active seizure conditions. UPLIFT is designed to address depression and improve mental health in PWE through mindfulness and cognitive-behavioral skills. HOBSCOTCH is a behavioral program designed to address memory and attention problems in PWE.

After completion of both “My Epilepsy” and “My Goals”, MINDSET compiles an Action Plan (AP), in English or Spanish, summarizing the patient’s seizure history, symptoms, medications, missed doses, and side effects as well as summary statements regarding the patient’s epilepsy self-management (ESM) behaviors and mood. The AP also provides a detailed summary page for each of the patient’s three chosen behavioral goals for seizure, medication, and lifestyle management, as well as their chosen strategies to achieve these goals and their confidence in their ability to use these strategies. Any currently challenging social situations flagged by the program are then listed with a prompt to discuss these with the health care provider. In addition, if the PWE’s answers from “My Epilepsy” indicate a need for more intensive intervention, a referral will also be added for the MEW programs that the PWE is eligible for. After reviewing the “My Plan” section, the patient is given the option to download or print the current Action Plan so that it can be used to guide decision making during their discussion with the provider. The patient and health care provider discuss the AP prior to the patient leaving the clinic and the clinic staff then contact the patient 2 weeks after the visit in a scheduled booster call to check in on how the plan is going.

MINDSET is also currently being tested as a Community Health Worker (CHW) mediated intervention for PWE. The goal is to integrate MINDSET into community-based clinics as an intervention for assisting CHWs in navigating, assessing, reinforcing, educating, and linking PWEs to community programs and services. Certified Community Health Workers can use assessment and feedback to assist people with epilepsy (PWE) in meeting their epilepsy self-management (ESM) goals to help them manage their seizures, medications, and lifestyle factors while also linking PWE to evidence-based educational interventions and social service programs.

MINDSET does not collect any personal health information (PHI) from PWEs or providers. Users log-in to the program using a preprogrammed set of credentials generated by staff at UTHealth. To request access to MINDSET please contact the Primary Investigator, Dr. Ross Shegog, at ross.shegog@uth.tmc.edu. For more information about MINDSET, please contact the MINDSETPlus Project Director, Katarzyna Czerniak, at katarzyna.w.czerniak@uth.tmc.edu

MINDSET is part of the Managing Epilepsy Well (MEW) Network.

https://managingepilepsywell.org/mindset