Principal Investigator(s): Gena Ghearing, Martha Sajotovic
Project Dates: 2019-2024
The MEW Network was established in 2007 with support from the CDC Epilepsy Program and Prevention Research Centers’ Program (PRCs). The MEW Network conducts research together with community leaders (such as local Epilepsy Foundation affiliates) and shares findings with the epilepsy community. Our goal is to develop and test self-management programs and tools for people with epilepsy and healthcare providers.
In spite of advances in biological therapies, many people with epilepsy have poor outcomes including negative health events (NHEs) such as frequent seizures, accidents and emergency department (ED) visits, and low quality of life. Risk factors for poorly controlled epilepsy include limited social support, poor medication adherence, and comorbidities like mental illnesses and substance use. People with epilepsy in rural or under-served communities face additional challenges such as social isolation, limited access to care and low levels of epilepsy awareness, all of which impede help-seeking and exacerbate epilepsy stigma.
The Managing Epilepsy Well (MEW) Network has been a national leader in developing, testing and disseminating evidence-based epilepsy self-management programs. One of these programs, Self-management for people with epilepsy and a history of negative health events (SMART) has been demonstrated to reduce epilepsy-related complications and improve quality of life and physical and mental health functioning. This project will: 1.) Replicate this evidence-based intervention in an alternative setting (rural and under-served communities), 2.) Incorporate best practices and recommended strategies for enhancing study recruitment and retention, and 3.) Assess program adopter’s perceptions of the intervention to inform implementation and dissemination.
SMART, developed by researchers at Case Western Reserve University (CWRU), is an on-line 12-week behavioral program targeted to reducing barriers and maximizing facilitators to self-care in high-risk people with epilepsy.10 SMART, delivered by Peer Educators (patients with epilepsy) and Nurse Educators, combines the portability and low cost of a web-based intervention with the personally salient components of behavior modeling that can be obtained by interacting with individuals who have “walked the walk” in living with and coping with epilepsy.
The project will be accomplished via 2 specific aims:
Aim 1: To identify and develop effective strategies that will optimize recruitment and retention in a SMART efficacy replication trial. Strategy planning will be informed by input from key stakeholders, including people with epilepsy in rural communities and community agencies and providers that provide support in these settings.
Aim 2: To test SMART vs. WL in a 6-month prospective RCT among people with epilepsy in rural and under-served communities. We hypothesize that at 6-month follow-up, SMART will be associated with reduced NHEs compared to WL. We also expect that SMART will be associated with improved quality of life, functioning, and physical and mental health. We expect that improvement will be maintained at 18-month follow-up. Based on input from RCT participants and other stakeholders, the study team will develop strategies to facilitate implementation and dissemination.
University of Arizona
University of Texas Sciences Center at Houston
University of Iowa in collaboration with Case Western University
New York University School of Medicine
University of Washington
More information about MEW can found on their website.
For information about the UI MEW Collaborating Center please contact Heidi Haines at firstname.lastname@example.org