Epilepsy patients who want to learn how to manage their own unique symptoms can now get individualized information via tablet computer through a research project at the University of Illinois at Chicago.
“PAUSE” — for Personalized Internet Assisted Underserved Self-management for Epilepsy — is a tablet-based tool customized for each patient to help them stay healthy and reduce the need for emergency services.
Epilepsy is a chronic neurological disorder characterized by abnormal brain activity and seizures that affects more than 65 million people worldwide. About one-third have difficulty controlling their seizures even with medication. Seizures can interfere with work, relationships, and the ability to live independently.
While children and older adults are most likely to have epilepsy, it impacts people of all ages, races, backgrounds and lifestyles. Every patient is different and has their own individual needs.
“The PAUSE program is based on the coordinated care model,” says Dr. Dilip Pandey, associate professor of neurology and rehabilitation in the UIC College of Medicine and a lead investigator on the PAUSE project. “The health care provider identifies information the patient can use to build self-management skills, and also asks each patient what they want to learn about their epilepsy, whether it’s medication management, avoiding seizure triggers, issues around driving – whatever they want to know about.
“Then, we program the PAUSE tablet to include the corresponding educational modules, containing information provided by the Epilepsy Foundation website,” Pandey said. “This allows us to create a personalized self-management education program for each patient.”
Patients take the PAUSE tablet home with them for 10 to 12 weeks and review the information at their own pace. The tablets also allow the patient to video-conference with the research staff to receive individualized assistance.
Approximately 90 patients have been referred to participate in the PAUSE program so far. Pandey plans to enroll about 100 patients from the UIC neurology clinic and another 100 patients referred through the Epilepsy Foundation of Greater Chicago.
PAUSE is one of five UIC projects supported by the Illinois Prevention Research Center, part of the UIC Institute for Health Research and Policy. The IPRC is funded by a grant from the U.S. Centers for Disease Control and Prevention to conduct innovative public health prevention research. The PAUSE study is also a part of the Managing Epilepsy Well Network, which is coordinated by the Prevention Research Center at Dartmouth College.
Dr. Jeffrey Loeb, the John S. Garvin Endowed Chair in Neurology at UIC, is a co-principal investigator on the PAUSE study.