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Self-Management Programs Help with Epilepsy

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For more than 10 years, the CDC Managing Epilepsy Well Network has developed and offered innovative self-management programs. Learn how people with epilepsy can better manage their condition by taking advantage of programs that work.

The Importance of Epilepsy Self-Management

Epilepsy is a broad term used for a brain disorder that causes seizures. Epilepsy can get in the way of life, mostly when seizures keep happening. Although there are many medicines to help prevent seizures, they don’t always work. In fact, more than half (56%) of adults with active epilepsy who take anti-seizure medicines are still having 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

Patients are more likely to participate in self-management programs if recommended by their physician.

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.

CDC’s Managing Epilepsy Well checklist describes self-management strategies in more detail and can be printed for use at home.

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

Programs and Tools You Can Use

To increase the availability of evidence-based self-management programs, CDC created the Managing Epilepsy Well (MEW) Network in 2007. The MEW Network has provided national leadership in developing, testing, and distributing innovative epilepsy self-management programs, tools, and trainings.2

MEW Network programs are tested and known to work. Many are fully or partially delivered by phone, online, or on other electronic devices to eliminate barriers such as lack of transportation and concerns about people’s negative reactions to epilepsy or witnessing a seizure.2   Several of the programs include social support so that people with epilepsy can interact with their peers, nurse educators, or other program staff. This provides meaningful ways for participants to connect with others for support and encouragement.

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
  • 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.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. TIME has been shown to be effective in reducing depressive symptoms.2

In collaboration with local Epilepsy Foundation (EF) affiliates, MEW programs have been delivered in many communities across the country. Starting this summer, the following programs will be offered:

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.

References

  1. Tian N, Boring M, Kobau R, Zack MM, Croft JB. Active Epilepsy and Seizure Control in Adults —United States, 2013 and 2015. MMWR. 2018;67:437–442. DOI: http://dx.doi.org/10.15585/mmwr.mm6715a1.
  2. Centers for Disease Control and Prevention. The Managing Epilepsy Well Network and Selected Self-Management Programs: Putting Collective Wisdom to Work for People with Epilepsy. Atlanta, GA: Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2016.
  3. Centers for Disease Control and Prevention. Living Well with Epilepsy. Accessed May 29, 2018.
  4. Sajatovic M, Jobst BC, Shegog R, et al. The Managing Epilepsy Well Network: advancing epilepsy self-management.  Am J Prev Med. 2017;52(3S3):S241–S245.
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