Studies Investigate Use of Tablet-Based Tool for Epilepsy Self-Management

For people living with epilepsy, self-management is critical for well-being and seizure control. Essentially, self-management behaviors are the steps a person takes to manage seizures, treatments, and epilepsy’s effect on daily life. Self-management education programs are one pathway to learning the skills and resources that people with epilepsy and families may need.

Three ongoing studies presented at the American Epilepsy Society’s 70^th Annual Meeting featured an innovative project called PAUSE to Learn Your Epilepsy.

What is PAUSE?

PAUSE stands for Personalized Internet-Assisted Underserved Self-Management for Epilepsy. It’s a tablet-based tool that is testing the use of the epilepsy.com to help people with epilepsy learn self-management skills. PAUSE is a program conducted at the University of Illinois (UIC) and funded by the Centers for Disease Control and Prevention (CDC) Managing Epilepsy Well (MEW) Network.

“The PAUSE program is based on the coordinated care model,” says Dr. Dilip Pandey, associate professor of neurology and rehabilitation in the UIC College of Medicine and lead investigator of the PAUSE project. “The healthcare provider identifies information that the patient can use to build self-management skills, and also asks each patient what they want to learn about their epilepsy, whether its medication management, avoiding seizure triggers, issues around driving – whatever they want to know about it.”

Researchers then take this knowledge and program a PAUSE tablet with educational modules from epilepsy.com that match the interests of the study participant.

Methods

PAUSE is focused on evaluating the effects of this program on adults from vulnerable populations living with epilepsy. The study framework includes baseline assessments, 10 to 12 weeks of individualized epilepsy self-management with video conferencing support, and four follow-up assessments occurring up to 1 year out. The health measures to be examined included:

• self-management
• self-efficacy
• outcome expectancies
• personal impact of epilepsy
• medication adherence
• quality of life

Goal Setting

One of the PAUSE studies presented initial results on goal-setting among the participants. People with epilepsy in the program completed goal sheets at enrollment where they were asked to list three personal goals to improve their self-management. They also were asked to list three ways they could improve their self-management. These results were compared to scores on the Epilepsy Self-Efficacy Scale which measures a person’s confidence in managing epilepsy in areas of medication, information, safety, seizure, and lifestyle management.

• Independent living (driving, working, or volunteering), well-being (mood, energy level), and seizure control were the three most common goals among people living with epilepsy.
• 44% of people with epilepsy could not list a method to improve their epilepsy.
• People who were able to identify a goal or area of improvement had greater self-efficacy, a measure of their confidence in managing their health.
• The researchers suggest well-being for people with epilepsy would be difficult to accomplish without addressing seizure control, especially for underserved populations.

Common Self-Management Challenges

Another PAUSE abstract looked at how people identified common self-management challenges. Experiences and thoughts shared by participants during the study were looked at for positive and negative themes.

• The two most common themes during initial video calls were related to seizure knowledge and management, as well as social support and relationships.
• The majority of people (77%) shared an equal or greater number of negative thoughts compared to positive thoughts.
• The researchers suggest that better understanding of the thoughts and experiences of people with epilepsy will help tailor self-management efforts and motivational supports.

Summary

The PAUSE study is exploring the use of a public-use website, epilepsy.com, to help people manage their epilepsy and its effect on their life. Using a personalized approach to self-management education, the researchers hope to reach underserved people and families living with epilepsy. The abstracts presented at the recent American Epilepsy Society Meeting explore initial findings on goal setting and challenges in living with epilepsy and how these may influence self-management education.

The PAUSE study is continuing to recruit patients from the UIC neurology clinic and the Epilepsy Foundation of Greater Chicago to further examine the use of PAUSE for self-management in epilepsy.

For more resources on self-management, please visit the following pages:

• #AimForZero
• Self-Management Programs
• Managing Your Epilepsy