Epilepsy self-management program shows promising results

Epilepsy is among the most common neurological conditions, marked by unpredictable seizures, accidents and injuries, reduced quality of life, stigma and-in the worst case-premature death. 

But a program-developed over several years by a Case Western Reserve University-led research team-that teaches people with epilepsy how to "self-manage" their disorder is showing positive results.

The program has been found to help people with epilepsy reduce related health complications and improve their mood and quality of life, according to a new study recently published in the peer-reviewed journal, Epilepsy & Behavior.

Results of this study provide a model for broad and practical expansion of the program to people with epilepsy."

Martha Sajatovic, the L. Douglas Lenkoski MD Professor in Psychiatry at the Case Western Reserve University School of Medicine

Sajatovic, who co-led the study funded by the U.S. Centers for Disease Control and Prevention (CDC), is also the Willard Brown Chair in Neurological Outcomes Research and director of the Neurological and Behavioral Outcomes Center at University Hospitals Cleveland Medical Center. The study was also co-led by Gena Ghearing, formerly at the University of Iowa and now a professor of neurology at the Icahn School of Medicine at Mount Sinai in New York. Collaborators also included researchers at the University of Cincinnati.

Self-managing the disorder

Epilepsy is a chronic health condition triggered by abnormal electrical activity in the brain

in which individuals experience recurrent-and usually unpredictable-seizures. According to the CDC:

• 1.2% of the United States population has active epilepsy. That's about 3 million adults and 470,000 children nationally.
• Epilepsy can last a lifetime and may be triggered by events like stroke and traumatic brain injury.

Given that people with chronic health conditions often have limited contact with their healthcare providers, self-management interventions have gained increasing attention for their potential benefit.

In particular, how well epilepsy patients manage the condition depends on their daily behavior, such as consistently taking medication, proper nutrition, exercise, stress management and avoiding activities or triggers that can make it more likely for seizures to occur, such as being sleep-deprived.

With that in mind, the CDC's Managing Epilepsy Well (MEW) network has led the development, testing and growth of various successful epilepsy self-management approaches over the last dozen years. 

Among them is a program Sajatovic and the Case Western Reserve team developed, called SMART, to support people with epilepsy who have experienced health complications, including poorly controlled seizures.

How it works

SMART features remote self-management training sessions for groups of six to 10 people with epilepsy. They meet by video conferencing for about an hour weekly for eight to 10 weeks.

The sessions are led by a nurse and "peer educator"-a person with epilepsy trained to deliver the detailed curriculum designed to help people learn to better manage and cope with their epilepsy and improve their overall well-being. Participants also get written resource materials to help them continue to practice refining their epilepsy self-management skills.

"Many people who participate in our SMART program have never been in a group with other people with epilepsy and find this a particularly valuable and rewarding part of the program," Sajatovic said.

The study

SMART's effectiveness was measured in two independent research studies. The published report summarizes the results of a clinical research study of 160 people with epilepsy. Half used the SMART program; half did not.

Compared to the control group, people with epilepsy who participated in the SMART program demonstrated reduced complications of the condition as well as improved mood and quality of life and an increase in the ability to manage their epilepsy. 

"This new clinical trial confirms the positive effects of SMART and also demonstrates how effective a simple and relatively inexpensive telehealth delivery can be," Sajatovic said.

What's ahead

The study team at Case Western Reserve has made substantial progress to refine, implement and expand the SMART program in community settings by collaborating with the Epilepsy Association in Cleveland, the Epilepsy Alliance of Ohio and the Epilepsy Association of Western and Central Pennsylvania, as well as with epilepsy treatment centers in Ohio and in Iowa.

"I am most excited about the possibility of establishing successful models of delivering SMART that can be used by clinical-care teams and by epilepsy-focused social services agencies," Sajatovic said. "I am hopeful that we can make the SMART program available to as many people with epilepsy as possible."