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For many of them, frequent and severe seizures can severely undermine their ability to work, sustain relationships, live independently, and even think clearly. They often encounter stigma and may experience depression.
The majority of patients in epilepsy clinics are people with these challenges, yet their seizures and quality of life can be considerably improved with fairly simple self-management skills. For deeply challenged patients, however, learning these skills is difficult. How can health care providers help them?
We are partnering with the Epilepsy Foundation to create a way for patients with epilepsy to reduce the impact of seizures on their lives.
We combine the outstanding online educational resources of Epilepsy.com with a wireless electronic device that allows real-time Web conferencing and personalized education programming for patients and their families.
Using this device, the patient, his or her family or caregiver, the physician and a nurse collaborate in tailoring the program’s pace and content components to the patient’s needs. The patient uses the device at home for 10 to 12 weeks to work through lessons, keep track of seizures, and receive online guidance from a trained educator or nurse.
We call this project Personalized Internet-Assisted Underserved Self-management of Epilepsy, or PAUSE, to Learn About Your Epilepsy.
In Phase 1 of this project, from Fall 2014 to Summer 2016, we set up the system and optimize it in a small pilot study. In Phase 2, from 2016 to 2019, we recruit study participants through the epilepsy specialty clinic of the University of Illinois at Chicago (UI Health) and through the Epilepsy Foundation of Greater Chicago.
Our project aims to empower people with epilepsy to improve the management of their disease, communication with their health care providers, and their quality of life. This project also aims to validate the use of such devices and tools in improving self-management of chronic disease among underserved and disadvantaged populations.
Our hypothesis — and hope — is that PAUSE to Learn About Your Epilepsy will improve compliance with medication regimens, knowledge about epilepsy, self-efficacy and epilepsy self-management; reduce seizure frequency and emergency room visits; and improve the quality of life for people with epilepsy.
OUR RESEARCH TEAM
Dilip K. Pandey, MD, PhD is the principal investigator of this special interest project. He has over 20 years of experience in neurologic and cardiovascular disease clinical trials, health services, and outcomes research. He is a physician epidemiologist and an associate professor of neurology and rehabilitation at the UIC College of Medicine in Chicago.
Jeffrey A. Loeb, MD, PhD, co-principal investigator of this special interest project, is the head and John S. Garvin Professor of the Department of Neurology and Rehabilitation in the UIC College of Medicine in Chicago. Dr. Loeb is a neurologist, epileptologist, and scientist. He has made important contributions to our understanding of human epilepsy through novel systems biology and other basic and translational research programs.
Yevgenya Kaydanova, MD, PhD, co-investigator of this special interest project, is associate professor of neurology and rehabilitation at UIC College of Medicine and an epileptologist at the University of Illinois Hospital and Health Science System.
The Illinois PRC intervention PAUSE to Learn Your Epilepsy uses the Epilepsy Foundation’s online educational material, tailoring it to patients’ needs.
We are partnering with the Epilepsy Foundation, a national nonprofit foundation working to prevent, control and cure epilepsy.
The tool in our research project will make use of the excellent educational materials and videos at Epilepsy.com, and we will work with the Greater Chicago chapter to bring this new tool to people with epilepsy who are not patients at UI Health.
COLLABORATING IN A THEMATIC RESEARCH NETWORK
As part of this special interest project, the Illinois PRC collaborates, under the direction of Dr. Dilip Pandey, a national network of scientists and community partners who work together to improve the quality of life of people with epilepsy.
The Managing Epilepsy Well (MEW) Network works to advance the science related to epilepsy self-management by conducting research with network and community stakeholders, implementing programs with partners, and broadly distributing research findings. It is funded by the CDC’s Division of Population Health.
The MEW network includes Prevention Research Centers at eight universities, including us at UIC:
Learn more about the Managing Epilepsy Well Network on the CDC website.
View a May 2015 presentation about our intervention study in this network.
This research is a special interest project funded as a competitive supplement grant (SIP 14-007) by the Centers for Disease Control and Prevention to the Illinois Prevention Research Center (under Cooperative Grant No. U48-DP005010), which is administered by the Institute for Health Research and Policy of the University of Illinois at Chicago (UIC).