The Importance of Epilepsy Self-Management
Learn how self-management programs can help people with epilepsy feel better and live fuller lives.
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 antiseizure 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
As with any chronic condition, people with epilepsy can benefit from learning skills that help them better manage their disorder and its effects on daily life.
Epilepsy self-management involves three areas:
- Treatment management, such as taking medicines as prescribed, keeping medical appointments, and communicating effectively with health care providers.
- Seizure management, such as recognizing and avoiding seizure triggers and keeping track of when seizures happen.
- Lifestyle management, such as getting enough sleep and reducing stress.3
Physician support of self-management is important. Patients are much more likely to participate in self-management programs if their health care provider recommends it.3
Programs and Tools You Can Use
To increase the availability of evidence-based self-management programs, CDC created the Managing Epilepsy Well (MEW) Networkexternal icon 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 from peers, nurse educators, or other program staff. This provides meaningful ways for participants to connect with others for support and encouragement.
- HOBSCOTCHexternal icon (Home Based Self-management and Cognitive Training Changes Lives), a program delivered in person and by phone. HOBSCOTCH teaches participants specific memory strategies and uses problem-solving therapy to improve memory and attention in people with epilepsy.4
- PACESexternal icon (Program for Active Consumer Engagement in Epilepsy Self-Management), a program that is delivered in person in a community setting or over the phone. PACES improves self-management, confidence, depression, and quality of life in people with epilepsy.4
- Project UPLIFTexternal icon (Using Practice and Learning to Increase Favorable Thoughts), an 8-week program delivered by phone. 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
- TIMEexternal icon (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 chapters and affiliates, MEW programs are being delivered in many communities across the country. Starting in Fall 2019, the following programs will be offered:
- HOBSCOTCH, through EF Connecticutexternal icon, EF Greater Chicagoexternal icon, EF Kentuckianaexternal icon (both in Kentucky and Indiana), EF Central & South Texasexternal icon, and EF Virginiaexternal icon
- PACES, through EF Alaskaexternal icon, EF Arizonaexternal icon, EF Michiganexternal icon, EF Oregonexternal icon, EF Eastern Pennsylvaniaexternal icon, EF Central & South Texasexternal icon, and EF Washingtonexternal icon.
- Project UPLIFT, through EF Coloradoexternal icon, EF Connecticutexternal icon, EF Delawareexternal icon, EF Greater Chicagoexternal icon, EF Marylandexternal icon, EF Michiganexternal icon, EF New Englandexternal icon, EF Northeastern New Yorkexternal icon, EF Ohioexternal icon, EF Central & South Texasexternal icon, and EF Houston-Dallas-Ft. Worth-West Texasexternal icon.
The MEW Network continues to test new programs for adults and children with epilepsy. To learn more about current activities, visit their websiteexternal icon. MEW Network resources include a free epilepsy self-management measurement tool pdf icon[37.8 KB]external icon that helps providers assess their patients’ self-management needs, and a free patient self-management checklist pdf icon[79.2 KB]external icon. Providers can also refer patients to learn more about self-management on the MEW Network page for patients and familiesexternal icon.
- 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.mm6715a1external icon.
- 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: US Dept of Health and Human Services; 2016.
- Centers for Disease Control and Prevention. Living Well with Epilepsy. Accessed August 12, 2019.
- 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.