What is epilepsy self-management?
Self-management is both a process and a set of behaviors. Epilepsy self-management has been defined as the steps or behaviors people with epilepsy use to manage their seizures, treatments and the impact of epilepsy on their daily lives. Self-management is a critical part of patient-centered care because it involves the person with epilepsy, their loved ones, and healthcare providers. A growing body of evidence supports the use of epilepsy self-management to improve health and quality of life outcomes.
- Commonly, people think about epilepsy self-management being related to practical tasks like observing and recording seizures or monitoring for medication side effects. However, there is much more to living with and self-managing epilepsy.
- Patient education and self-management differ. Patient education involves learning new information (e.g., reading about epilepsy in a pamphlet). Epilepsy self-management is multi-faceted and requires engaging in learning to develop new and appropriate skills, having access to relevant resources and supports, and building confidence to implement healthy behaviors to better manage a chronic disease.
- Resources for epilepsy self-management care focus on healthy living, chronic care management, and epilepsy-specific challenges.
What is the Managing Epilepsy Well (MEW) Network?
Funded by the Centers for Disease Control and Prevention, the Managing Epilepsy Well Network (MEW) is a group of epilepsy researchers and epilepsy stakeholders working together to develop and test programs that advance the science of epilepsy self-management and improve quality of life of people with epilepsy. Since 2007, the MEW Network has developed 10 epilepsy self-management programs.
Resources for Epilepsy Self-Management
AES Nursing 101: This educational program introduces nurses to epilepsy, including a module on patient/family education and self-management. The module gives an introduction to epilepsy self-management and key areas for education and behavior change that nurses and other providers can utilize in care settings.
MEW Network Programs
The following programs have been developed and tested by the MEW network, participating universities, and organizations. Programs are evidence-based, manualized, and formal trainings are in place to train epilepsy professionals in how to deliver these programs. Program facilitators and coaches can include: physicians inclusive of fellows, nurses, social workers, counselors, community health workers, psychologists, psychiatrists, and more. More information about programs can be found at managingepilepsywell.org.
- HOBSCOTCH (Home-Based Self-management and COgnitive Training CHanges lives): A behavioral program designed to address memory and attention problems in adults with epilepsy. The program is designed to help adults with seizures find ways to manage and cope with memory problems in order to lead happier, more productive lives.
- MINDSET (Self-Management Epilepsy Decision Support for Adult People with Epilepsy and Their Providers): A tablet-based decision aid for use in an outpatient healthcare setting to assist both the patients and their health care providers (HCPs) in assessing the patient’s epilepsy self-management behaviors relating to seizures, medications, and lifestyle.
- PACES (The Program of Active Consumer Engagement in Self-management in epilepsy): The goal of PACES is to increase the medical, psychosocial, and community adjustment of adults with active seizure conditions. Participants develop coping and goal-setting strategies that improve overall and discrete aspects of quality of life, epilepsy self-management and efficacy, and anxiety and depression.
- Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts): A telephone program using cognitive behavioral therapy and mindfulness to treat depression in adults with epilepsy.
- PEARLS (Program to Encourage Active Rewarding Lives): A home-based depression treatment program for adults with epilepsy and depression. The program trains mental health professionals to provide intervention in people’s homes. For information about this program or training opportunities, contact the Pearls Program.
- SMART (Self-Management for People with Epilepsy and a History of Negative Health Events): SMART is a program for adult individuals with sub-optimally controlled epilepsy. It involves educational and behavioral interventions intended to enhance epilepsy self-management.
- TIME (Targeted Self-Management for Epilepsy and Mental Illness): group sessions followed by four telephone coaching sessions with nurse-educator and peer-educator delivering epilepsy education and problem-solving.
The Epilepsy Foundation disseminates many of these programs under a cooperative agreement with the Centers for Disease Control. For more information, contact Jody Kakacek at 301-918-3722 or via email at firstname.lastname@example.org or visit www.epilepsy.com
For more information on MEW Network self-management programs visit managingepilepsywell.org or contact MEWprograms@hitchcock.org.
The MEW is funded by the CDC and is supported by special interest project (SIP) SIPs 19-002 and Cooperative agreement numbers U48DP0064313 (AZ); U48DP006377 (EMORY); U48DP006389 (IOWA); U48DP006396 (NYU); U48DP0066398 (WA).
Texting 4 Control developed by the Epilepsy Foundation (EF), is made possible with funding from the Centers for Disease Control and Prevention (CDC) under cooperative agreement number 1U58DP003832-02. Its content are solely the responsibility of the authors and do not necessarily represent the official views of the CDC or the MEW Network.