Self-Management Programs Help with Epilepsy

For 10 years the CDC Managing Epilepsy Well Network has developed innovative programs using e-tools to reach people with epilepsy. Learn how these programs can help your patients with epilepsy better manage their condition.

The Importance of Epilepsy Self-Management

Epilepsy is a broad term used for a brain disorder that causes seizures. There are many different types of epilepsy and many different kinds of seizures. Epilepsy can get in the way of life, mostly when seizures keep happening. Although there are many drugs to help prevent seizures, they don’t always work. In fact, about one-third of people with epilepsy who are receiving care still have seizures.¹ Uncontrolled seizures can increase the risk of injury, anxiety, depression, brain damage, and in rare cases, death. They can also interfere with activities such as working, going to school, and socializing with friends and family. Side effects from medicine (such as feeling tired or having memory problems) can add to the challenges of living with epilepsy.²

As with any chronic condition, many people with epilepsy can benefit from learning skills and techniques that help them better manage their disorder and its effects on daily life.

Epilepsy self-management involves three areas:

1. Treatment management, such as taking medicines as prescribed, keeping medical appointments, and communicating effectively with health care providers.
2. Seizure management, such as recognizing and avoiding seizure triggers and keeping track of when seizures happen.
3. Lifestyle management, such as getting adequate sleep and reducing stress.³

Physician support of self-management is a key component of effective care for a chronic condition such as epilepsy. Patients are much more likely to participate in self-management programs with a recommendation from their health care provider.³

The Value of the Managing Epilepsy Well (MEW) Network

Until recently, patient management of epilepsy focused more on providing people with information about the disorder, and the importance of patients taking their medicine . It focused less on helping people with epilepsy learn skills and increase their confidence to adopt healthful behaviors that can improve their seizure control (such as sleep and stress reduction),⁴ and improve mood or memory. To fill this gap in understanding about self-management, CDC created the MEW Network in 2007. Over the last 10 years, the MEW Network has provided national leadership in developing, testing, and distributing innovative self-management programs, tools, and trainings.² The MEW Network has led the way in developing programs we know work to improve the lives of people with epilepsy.⁴

The MEW Network is funded by the CDC Epilepsy Program and is part of CDC’s Prevention Research Centers (PRC) Program. Members come from US universities and community-based organizations. Current funded partners include:

• Dartmouth College PRC (Lebanon, New Hampshire)
• Case Western Reserve University PRC (Cleveland, Ohio)
• University of Washington PRC (Seattle, Washington)
• University of Arizona PRC (Tucson, Arizona)
• Morehouse School of Medicine PRC (Atlanta, Georgia)
• New York University PRC (New York City, New York)
• University of Illinois at Chicago PRC (Chicago, Illinois)
• University of Minnesota PRC (Minneapolis, Minnesota)

Programs and Tools You Can Use

MEW Network programs are tested and known to work. Many are fully or partially delivered by phone, online, or on other electronic devices in order to eliminate barriers to care such as lack of transportation and encountering people’s negative reactions to epilepsy seizures.² Several of the programs include social support so that people with epilepsy can interact with their peers, nurse educators, or other program staff—helping them to connect in meaningful ways with others who provide support and encouragement for goal-setting.

Currently available programs include:

• HOBSCOTCH (Home Based Self-management and Cognitive Training Changes Lives), a program delivered in person and by telephone that addresses problems with memory and thinking. This programs teaches participants specific memory strategies and uses problem solving therapy to improve memory and attention in people with epilepsy.⁴
• PACES (Program for Active Consumer Engagement in Epilepsy Self-Management), a program that is delivered in person in a community setting or over the telephone. PACES has been shown to improve self-management, confidence, depression, and quality of life in people with epilepsy.⁴
• PEARLS (Program to Encourage Active Rewarding Lives), a home-based program for people with epilepsy and depression. PEARLS uses a team-based approach to teach participants how to identify and solve problems they have, become more socially active, and plan pleasant activities. Training is available through the University of Washington.⁴
• TIME (Targeted Self-Management for Epilepsy and Mental Illness) is a program for adults who have both epilepsy and a serious mental illness, such as severe depression, bipolar disorder, or schizophrenia. TIME consists of 12 weekly group sessions that include education, behavioral modeling, and group support. Groups are co-led by a nurse educator and a peer educator. TIME has been shown to be effective in reducing depressive symptoms.²
• Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts), an 8-week program delivered by telephone. UPLIFT uses cognitive behavioral and mindfulness therapies to reduce depressive symptoms, and improve knowledge and skills for depression self-management.  Free training is available for mental health professionals.  With collaboration with local Epilepsy Foundation affiliates, UPLIFT is available in 4 states (CO, MD, MI, and NY).⁴
• WebEase (Epilepsy Awareness Support and Education), a free, online program for adults with epilepsy that can be tailored to meet specific needs, such as learning new skills or creating plans to take medicines as prescribed, manage stress, and get a good night’s sleep.⁴

The MEW Network continues to test new programs for adults and children with epilepsy. To learn more about current activities, visit their website. Other MEW Network resources include a free epilepsy self-management measurement tool that helps providers assess their patient self-management needs and webinars, podcasts, and fact-sheets on epilepsy self-management for patients and providers.