Managing Epilepsy Well (MEW) Network
The Managing Epilepsy Well Network (MEW) was established in 2007 to advance the science on epilepsy self-management by conducting high-quality research across a network of universities, collaborating with community stakeholders to implement activities, and broadly disseminating research findings. The MEW Network addresses the Living Well with Epilepsy (2003) Cdc-pdf[PDF-1.6MB] priority recommendations, and the Institute of Medicine Epilepsy Across the SpectrumExternal 2012 recommendations related to accelerating, promoting, and disseminating epilepsy self-management research. The MEW Network is one of CDC’s Prevention Research Centers Program thematic networks.
In collaboration with local Epilepsy Foundation (EF) affiliates, MEW programs have been delivered in communities across the United States. Starting in the summer of 2018, the following programs will be offered:
- Project UPLIFT, through EF of DelawareExternal, EF of Northeastern New YorkExternal, and EF Metropolitan WashingtonExternal.
- PACES, through EF of MichiganExternal, EF NorthwestExternal, and EF Central & South TexasExternal.
- HOBSCOTCH, through EF ConnecticutExternal, EF Greater ChicagoExternal, EF KentuckianaExternal, EF Central & South TexasExternal, and EF VirginiaExternal.
TIMEExternal is also being offered through a partnership between Case Western Reserve University, the Epilepsy Association of Cleveland, and the Alcohol, Drug Addiction and Mental Health Services (ADAMHS) Board of Cuyahoga County, Ohio.
The MEW Network currently comprises one Coordinating Center (DartmouthExternal College) and seven Collaborating Center members.
Legacy members include the following
- Emory UniversityExternal
- University of MichiganExternal
- University of Texas Health Sciences Center at HoustonExternal
Dartmouth serves as the coordinating center for the MEW Network in collaboration with Emory University. This team will facilitate communication and collaboration across the MEW Network in the development, evaluation, and dissemination of epilepsy self-management programs. Dartmouth will work with the MEW Network to lead the development of guidelines for program dissemination and models for the sustainability of programs.
Dartmouth will also continue to evaluate HOBSCOTCH (Home Based Self-management and Cognitive Training Changes Lives), a promising self-management program for adults with epilepsy and memory problems. Delivered by phone, HOBSCOTCH will be disseminated to adults with epilepsy living in rural New England to eliminate their barriers to care. Dartmouth will also examine the cost-effectiveness of HOBSCOTCH.
Case Western University
SMART (Self-management for people with epilepsy and a history of negative health events)
SMART will be developed to improve self-management and quality of life for adults with epilepsy with recent (past 6 months) negative health events (NHEs) (e.g., seizure, hospitalization, ED visit, accident/traumatic injury, self-harm attempt). The SMART study will enroll participants from lower-income urban locations, safety-net health systems, and a Veterans Health Care System. SMART will be delivered online, but will also include one or more group sessions, telephone coaching, and peer support. SMART will be tested for its feasibility, acceptability, and efficacy in people with epilepsy and NHEs.
Case-Western will also lead its efforts to develop an integrated database for the MEW Network to expand opportunities to evaluate self-management outcomes in people with epilepsy, and to facilitate possible future linkages to other epilepsy databases.
University of Arizona
Evaluation of MINDSET for Hispanic-American adults with epilepsy
The Management Information Decision Support Epilepsy Tool (MINDSETExternal) was developed as a tablet-based clinical aid for both the patient and health care provider (HCP) to improve communication about self-management. MINDSET uses data entered by the patient during a clinic visit to create a patient profile and an action plan tailored to the patient’s self- management needs. The action plan includes recommended behavioral goals and strategies developed jointly by the patient and provider during the clinic visit. The goal of this project is to develop and test a Spanish version of MINDSET. Both the English and Spanish version of MINDSET will be tested with patients attending four clinic sites on the Arizona and Texas border.
University of Illinois (Chicago)
PAUSE (Personalized Internet Assisted Underserved Self-management of Epilepsy)
In partnership with the Epilepsy Foundation, PAUSE will provide patients who have refractory epilepsy with free access to a computer tablet and Internet service. Patients will test epilepsy educational information based on epilepsy.com content and real-time (web-based) video conferencing with a health educator. Based on patient needs identified during a clinic visit, a health care provider will assign personalized educational content for the patient or a caregiver that can be reviewed at a customizable pace and with guidance from a trained nurse or health educator via web conferencing.
Morehouse School of Medicine
Adapting Evidence-Based Epilepsy Self-Management Programs for Blacks in Georgia
Using a Community Advisory Committee, focus groups, and interviews with community stakeholders, this project proposes to replicate the use of UPLIFTExternal among African Americans to test its effectiveness and validate an epilepsy self-management instrument with African-American adults with epilepsy. This project seeks to promote the adoption and replication of self-management programs in underserved communities, and to understand the features that facilitate dissemination, replication, and adoption of these programs among African-American adults with epilepsy and their providers.
New York University
Evaluation of Project UPLIFT for Hispanic adults with epilepsy
To address the unmet mental health needs of medically underserved Spanish-speaking adults with epilepsy, New York University will adapt UPLIFT for Hispanic adults with epilepsy. Project activities will include conducting focus groups with Spanish-speaking adults to understand how UPLIFT might be modified to account for cultural differences and to meet the needs of this group. UPLIFT content will be modified as necessary, content will be translated, and the Spanish-version of UPLIFT will be tested to assess its effectiveness in reducing depressive symptoms in Hispanic adults with epilepsy.
University of Minnesota
Youth, Epilepsy, and Successful Self-Management
The purpose of this study is to develop an online self-management program for people aged 13 to 19 years with epilepsy that is grounded in behavioral science and youth development theory. The project will include a systematic review of the literature related to pediatric self-management; a series of focus groups with young people with epilepsy, parents/guardians of young people with epilepsy, and key informants; the creation of an advisory group comprising young people with epilepsy to assist with program design and content; and intervention evaluation.
University of Washington
PACES in Epilepsy: Replication, Extension, and Dissemination
Program for Active Consumer Engagement in Self-Management (PACESExternal) was developed to improve self-management and related health outcomes in adults with epilepsy. The goals of this study are to adapt PACES for telephone delivery; support both in-person and telephone group delivery of the program; and evaluate the effectiveness of PACES in both rural and veteran subpopulations in the Pacific Northwest. PACES will include Epilepsy Foundation HOPE Mentors who will provide peer support to reinforce participant goal achievement. If effective, the PACES team will collaborate with the University of Washington Training Xchange staff to build a sustainable model of training recruitment, training options, and national dissemination (in-person and e-learning).
For publications resulting from MEW Network research, visit the MEW Network WebsiteExternal.
Below are publications that provide an overview of the MEW Network:
Kobau R, Price P, Hawkins NA. News From the CDC: Translating Epilepsy Self-management Research to Practice. Translational Behavioral Medicine: Practice, Policy and Research. 2012;2(2):124-125.
Kobau R, Price P, Giles HW, Pennell P, Hargis E. Forward/Editorial: Centers for Disease Control and Prevention Managing Epilepsy Well Network. Epilepsy Behav. 2010;19(3):216-217.
DiIorio C, Bamps Y, Edwards AL, et al. The Prevention Research Centers’ Managing Epilepsy Well Network. Epilepsy & Behav. 2010;19(3):218-224.
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.