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Managing Epilepsy Well

Principal Investigator
Robert Fraser, MD, PhD

Erica Johnson, PhD, CRC

Many people who have epilepsy don’t talk about it, and it turns out that they would be better off if they did. That’s why researchers at the University of Washington are helping people with epilepsy learn how to manage problems related to their illness, along with a host of other skills to improve their quality of life.

In 2007, the CDC wanted to promote research about epilepsy self-management and improve the quality of life for people with epilepsy. As a result, CDC created the Managing Epilepsy Well Network with four collaborating centers, including one housed within Health Promotion Research Center (HPRC) at the University of Washington.

HPRC’s researchers have taken a new approach to building a program to help people with epilepsy—they got their data from people with epilepsy. Robert Fraser, professor in the Department of Rehabilitation Medicine at the University of Washington, and Erica Johnson, professor in the Department of Human Services and Rehabilitation at Western Washington University, started with a comprehensive survey that asked people with epilepsy to structure a program that would provide them with skills to better self-manage their illness. And the questions didn’t stop at figuring out what content to include; it also asked how, where, when, and who should present the content.

“We had a 61% response rate, which is very high for this kind of research. We were interested in finding out if we were to provide a service, what would it look like?” said Fraser. “How long should it be? What time of the week? Who should lead it?”

It could be questions like these that led to the remarkable buy-in and excitement the program’s receiving now that it’s in practice. Researchers validated the survey responses with two focus groups and then went to work creating the program based on their information.

“On a five point scale, our content satisfaction ratings are between 4 and 4.6,” says Fraser. “And our drop-out rate is extremely low.”

The program ended up assembling groups of six to eight participants who meet one night per week for eight weeks. There are about seven groups running simultaneously. Each week, the group addresses a different topic. The topics vary, including a week each on types of seizures and medicine/treatment options, dealing with sadness or stress, dealing with cognitive issues, socializing on a budget, assertive communication, and general health and well-being. Each week ends with individual goal setting, where participants explain their goal and evaluate how confident they are that they can accomplish it. The following week, the group begins by reviewing last week’s goals and progress, listening to and discussing a presentation about the week’s topic, and ending with goal setting for next week. Resources that help with individuals’ goals are then mailed to the home between sessions.

“Our participants come across as getting a lot out of this program,” says Johnson. “It’s striking to me how much the people we meet compartmentalize their epilepsy but really need to talk about it and the problems that it causes.”

Participants rate the ability to engage with others with epilepsy as one of the most valuable parts of the program, and they also rate the session about assertion and disclosure as immensely helpful. This part of the curriculum helps participants script what they say to others about their illness to help clearly articulate what a person might expect to see if the person with epilepsy goes into seizure, how often they experience different types of seizures, and what they might do. The module teaches them to be clear, succinct, and comfortable in their presentation. Anecdotal reports of their success have been quite remarkable.

For the 12,500 patients newly diagnosed with epilepsy each year and those already diagnosed, the Managing Epilepsy Well Network is making a difference as it works to find gaps in knowledge and programs related to improving the lives of those with epilepsy. As successes are found, efforts are taken to expand the impact. “Most of our participants are local [to the Seattle area] because they have to come in one night per week to meet,” says Johnson. “Now we’re trying to figure out how we reach rural communities.”

The next step for HPRC researchers, which could be challenging, is an attempt to take the aspects of the in-person program and see if it can be adapted for rural communities via telephone. Drs. Fraser and Johnson are excited to see how effective the adapted program will be.

The Managing Epilepsy Well Network has created a community of practice workgroups, created training tools, and given presentations and published research regarding how to improve the quality of life of those with epilepsy.

“We have four universities really collaborating, and I don’t know of another disability network like ours,” says Fraser. “The collaboration involves consistent telephone conferencing and research work groups. It’s pretty unique.”

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