Management Information & Decision Support Epilepsy Tool (Mindset): Development of a Self-Management Tool for the Hispanic Community

Abstract

Background: Hispanic people with epilepsy, especially those who are primarily Spanish speaking, may be at an increased risk of disparities in managing their epilepsy. This may be due to limited communication between patients and healthcare providers (HCPs) and/or the scarcity of epilepsy self-management tools available to them. Self-management has been shown to help people with epilepsy increase their self-confidence and better cope with their disease. Despite advances in the field, educational interventions for epilepsy self-management are still limited. To help mitigate these challenges, this study renovated and translated into Spanish an existing epilepsy self-management support tool known as Management Information and Decision Support Epilepsy Tool (MINDSET). MINDSET is a tablet-based clinical aid designed for use by both patients and their HCPs to promote shared informed treatment and behavioral change decision-making. MINDSET uses information that the patient enters into a tablet-based application to create a patient profile and an action plan tailored to the patient’s self-management “at-risk” behaviors for review by the patient and their HCP during consultation. Purpose: The overarching goal of this study was to develop a theoretically-enhanced and empirically tested Spanish version of the MINDSET program tailored to the Hispanic community, taking into consideration a series of social, cultural, and economic factors unique to the community. This tool has been culturally tailored to help improve care to underserved Hispanics and address disparities in epilepsy care. A Spanish version of MINDSET will provide Hispanic patients with epilepsy with a tool that can help them acquire a better awareness of their health condition and to learn new skills to help them improve their epilepsy self-management, ultimately resulting in improved treatment compliance, fewer seizures, and reduced health care related costs. Methods: The usability study of this project consisted of two parts. Part 1 consists of the software development of the new Spanish version of MINDSET (both content and technical features). Part 2 consists of the usability testing of MINDET (i.e. the degree to which the program can be used by patients to achieve quantified objectives with effectiveness, efficiency, and satisfaction in its use). Part 1: The MINDSET assessment questionnaire (My Epilepsy) was revised by integrating systematic reviews from eight members of a research team composed of experts in communication technology, behavioral science, public health, and in the clinical management of epilepsy. MINDSET includes questions related to patient seizure history, seizure and medication management, and lifestyle management. A new module in the program (My Goals and Strategies) was created to list all of a patients’ at-risk items in each self-management domain and to identify items (i.e. Goals) for improvement. The patient is then asked to select from a list of behavioral strategies to meet their selected goals, estimate confidence to perform these behaviors; list any barriers for achievement, and brainstorm strategies to overcome any barriers. A new Action Plan is then created as a social contract between the patient and their doctor, where the patient commits to improving any self-management items that may need improvement. The Action Plan also serves as a communication tool to facilitate discussion between the patient and their doctor. Lastly, the new version of MINDSET was programmed for use. This step was completed by software programmers under contract with the research team. Once programmed into the computer tablets, the program was “alpha-tested” within the research team (i.e. a form of in-house acceptance testing) to identify any technical problems with the program before testing it with patients. Part 2: A usability study of the new version of MINDSET (4.1) was conducted with a sample of Hispanic patients (n=8) in four neurology clinics in Arizona and Texas. A usability rating scale and exit interview were used to collect quantitative and qualitative usability data after patients completed MINDSET. Prior to translating MINDSET into Spanish, the program was revised to address any comments and/or feedback provided by the patients during the first usability test of the program. MINDSET was then translated into Spanish, programmed into the tablets, and tested by a different group of Spanish-speaking patients (n=8) in four clinics in Arizona and Texas. Conclusion: The English and Spanish usability testing of MINDSET proved to be very effective. Patients participating in the usability study identified gaps and concerns with MINDSET and they provided their feedback and recommendations for improving the program (i.e. both content and interface). Overall, most of the patients perceived MINDSET as having a positive impact on managing their epilepsy (62.5-100%), found the program to be credible (87.5-100%) and found that the program was easy to use (87.5%). The new version of MINDSET (4.1) mark significant improvements over previous versions of the program in terms of its focus on prioritization and goal setting for self-management practice. The new Spanish version of the program (Span-MINDSET) will help address disparities in the care of epilepsy amongst Hispanic Spanish-speaking patients by making available a tool that will help them improve their knowledge, capacity, and better management of their epilepsy. Positive usability findings suggest that tablet-based Spanish language decision support is acceptable for Spanish speaking Mexican-American patients with epilepsy. These results also indicate a relationship between positive self-management behaviors and better health outcomes.