Managing Epilepsy Well: Network for Epilepsy Self-Management

Emory University: Prevention Research Center (Coordinating Center)

University of Michigan: Prevention Research Center

University of Texas Health Science Center at Houston: University of Texas Prevention Research Center

University of Washington: Health Promotion Research Center

Topics:
Epilepsy

The Managing Epilepsy Well (MEW) network is intended to address research priority areas identified during Living Well with Epilepsy II, the second national conference on public health and epilepsy, that relate to self-management. The network will develop and implement a coordinated applied research agenda; conduct research activities that promote self-management and quality of life in home, community, or clinical settings; and work with public health , mental health, social services agencies, and other partners to implement and accelerate the dissemination of activities. The goal of the MEW network is to increase the number of tested epilepsy self-management programs available to health care providers and members of the epilepsy community.

Additional information about the network is available on its Web site.

Individual Center Projects

 

Evaluating the effectiveness of two epilepsy self-management programs
Emory University: Prevention Research Center

Two epilepsy self-management interventions, WebEase and Project UPLIFT, will be tested with older adolescents and adults with epilepsy. WebEase is a 6-week Web-based program comprising three 2-week modules on medication, stress, and sleep management. Researchers will determine if users of WebEase show improvement in epilepsy-related knowledge, medication adherence, stress management, sleep time, and quality of life. Project UPLIFT is an 8-week program that will be delivered by the Internet or by telephone to people with epilepsy who want to reduce their depression. Researchers will determine if participants show improvement in depressive symptoms; self-perceptions of quality of life, satisfaction with life, self-compassion, purpose in life, sleep time and quality; and knowledge and skills related to mindfulness and depression.

Assessing the Effects of Epilepsy Self-Management
University of Texas Health Science Center at Houston: University of Texas Prevention Research Center

Results from this study are intended to form a foundation for developing effective behavioral interventions to improve self-management for people with epilepsy. The project will examine predictors of self-management — attitudes and social, behavioral, and environmental factors — and their associations with treatment adherence (e.g., blood anti-epileptic drug [AED] levels and days missed taking AEDS), and health outcomes (e.g., emergency room visits, seizure control, quality of life, and functional status) in a sociodemographically diverse population of people with epilepsy. The researchers will work with a cohort of 450 patients with epilepsy already identified at two clinical sites in Houston. The data on self-management and drug levels will be merged with the longitudinal data on drug-taking behavior, acute health care use, and health outcomes.

Helping People with Epilepsy Improve Their Quality of Life
University of Michigan: Prevention Research Center
Principal Investigator: Noreen Clark, nmclark@umich.edu  

The project goal is to help people with epilepsy successfully manage the medical and psychosocial challenges of daily living. The researchers are partnering with the Epilepsy Foundation of Michigan, the Center for Managing Chronic Disease, and state and local public health and mental health agencies to develop an epilepsy self-management program. The project team is gathering information, from practitioners and literature reviews, to identify the successful components of chronic disease self-management programs and the measures that reliably assess participants' health and behavioral outcomes. After analyzing the information, the team will adapt a program for adults with epilepsy and conduct a pilot study to evaluate the program's effectiveness.

Developing Community-Based Self-Management Programs for Adults with Epilepsy
University of Washington: Health Promotion Research Center
Principal Investigator: Robert Fraser, rfraser@u.washington.edu

In this project, the research team aims to improve the medical outcomes and quality of life for adults with epilepsy through community-based programs. The team is gathering information about the daily challenges of these adults, including their access and use of community resources. After analyzing the information, the researchers will develop a coordinated plan for implementing an epilepsy self-management program and a strategy to help communities promote the plan.

 

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