man with tablet

Begley C, Chong J, Shegog R, et al. Epilepsy & Behavior 88 (2018): 218-226.

Purpose

This study looked at the use of a digital self-management program that was developed to use in clinic settings. This program called MINDSET (Management Information and Decision Support Epilepsy Tool) helps people with epilepsy and their health care providers identify their progress in managing their epilepsy, set goals they would like to achieve, and select ways to do this.

The MINDSET program has been updated to help people develop goals and choose ways to manage seizures, medications, information and lifestyle. A Spanish version of the tool has also been developed as some needs and barriers facing Hispanic people with epilepsy differ.

Description of Study

  • The study tested the use of MINDSET among 43 Spanish- and English-speaking Hispanic people living with epilepsy in selected clinics in Arizona and Texas.
  • People in the study were shown how to use a tablet with the MINDSET program on it before a visit with their epilepsy doctor. They used the program at two visits.
  • People entered information into the tablet about their seizures and what they could do to help manage them. Areas that people had difficulty with were noted so they could talk about these with their doctor. They choose goals, selected actions to manage their seizures better, and rated how confident they felt about their plans. Their doctor reviewed their plans with them and any problems or barriers they may have.
  • People were contacted by phone after visits to reinforce plans.
  • On follow-up visits, people reviewed their progress and revised goals and plans as needed.
  • During the study, information was collected about the use and helpfulness of the MINDSET program, as well as self-management behaviors, confidence and mood.  Health care providers were also asked about the use and helpfulness of the program.

Summary of Study Findings

  • The majority of people were Hispanic of Mexican descent. They had lived in the United States for most of their lives.
  • The average self-management scores were highest in the areas for medication, seizure and safety.
  • People had a harder time consistently keeping a healthy lifestyle that could affect seizures, keeping track of seizures, or talking to others about epilepsy.
  • Over 70% of people using the program (both English and Spanish versions) found it was easy to use, helpful, and trustworthy. They found it helped with talking to their doctors about their epilepsy and how to manage it.
  • 75% of people chose to use the English version of MINDSET.
  • 3 health care professionals (epilepsy doctors) found MINDSET helpful and helped people focus on specific issues such as adherence or lifestyle.
  • Using the program required extra time than usual clinic visits. The doctors recommended planning for extra time to use the program or having people complete questions before their visits.

What does this mean?

  • The MINDSET program may be a helpful tool for people with epilepsy to use with their health care providers. This tool encourages both patients and providers to work together on decisions affecting epilepsy and seizure management. Plans can be tailored to a person’s needs and monitored at visits.
  • The extra time required to use this program would be expected. In most medical visits now, self management is not addressed by physicians in this manner, thus this introduces new content and approaches. Trying different approaches to complete and follow-up on self-management education needs to be explored.

Article published in Epilepsy & Behavior, November 2018.

Authored By: 
Patty Obsorne Shafer RN, MN
Authored Date: 
03/2019