Illinois PRC - Managing Epilepsy Well: Network for Epilepsy Self-Management
Also known as
Personalized Internet-Assisted Underserved Self-management of Epilepsy (PAUSE)
One third of all patients with epilepsy are refractory and a significant percentage of those patients have developmental, cognitive, and psychiatric co-morbidities. This patient population forms a large portion of our epilepsy specialty clinics and are the most difficult to manage. Often considerable improvements in both seizures and quality of life can be realized by fairly simple self-management skills; however, for these complex patients, this is a challenging task.
In this project, we are partnering with the Epilepsy Foundation to create a way for this patient population and their caregivers to self-manage epilepsy. In PAUSE to Learn about Your Epilepsy, we will combine the newly created and outstanding online educational resources from Epilepsy.com with a wireless electronic device that allows real-time web conferencing and personalized education program for each patient and his or her family. The patient with his or her family, physician and nurse can design a personalized program together that can run at a customizable pace with variable online guidance with a trained educator or nurse online with them. This project aims to validate the use of such devices and tools as a means of reaching out to underserved and disadvantaged populations for this and downstream uses for our patients with epilepsy.
In Phase I (the first two years) of this project, we will set up the system, optimize the approach and improve the modules (years 1-2). In Phase II, over the following three years, we will employ the system both in our specialty clinic at UIC as well as through our local Epilepsy Foundation chapter through the community to reach patients not in our clinic. Outcome measures will be based on pre-education measures and include satisfaction with the educational experience, seizure control, and quality of life.
The Illinois PRC is a collaborating center in the Managing Epilepsy Well: Network for Epilepsy Self-Management, which is coordinated by the Prevention Research Center at Darthmouth College, and includes other collaborating PRCs at:
This competitive supplement grant (SIP 14-007) to the Illinois Prevention Research Center supports the center’s participation in a CDC network of six PRCs that conduct research to advance epilepsy self-management. The award amount listed is a projection based on the original notice of award.