PAUSE Program Helps to Bring Personalized Care to Epilepsy Patients

PAUSE Program Helps to Bring Personalized Care to Epilepsy Patients

People with epilepsy who want to learn how to better manage their symptoms can now receive personalized information via a tablet computer through a research project at the University of Illinois at Chicago.

The project, called PAUSE (for Personalized Internet Assisted Underserved Self-management for Epilepsy), is a tablet-based tool that can be customized to fit a patient’s particular care needs and disease management focus, so as to help patients stay healthy. Self-management skills are known to improve medication adherence and to avoid seizure triggers.

“The PAUSE program is based on the coordinated care model,” Dilip Pandey, PhD, lead investigator on the PAUSE project and an associate professor of neurology and rehabilitation at UIC, said in a press release.

“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,” Pandey said. “Then, we program the PAUSE tablet to include the corresponding educational modules, containing information provided by the Epilepsy Foundation website. This allows us to create a personalized self-management education program for each patient.”

Participants take the PAUSE tablet home for 10 to 12 weeks and review the information at their own pace. Using the tablets, patients can also video-conference members of the research staff to receive individualized assistance.

So far, about 90 patients have been referred to participate in the PAUSE program and 200 more are planned to be enrolled: 100 from the UIC neurology clinic and another 100 in referrals from the Epilepsy Foundation of Greater Chicago.

PAUSE is one of five projects supported by the Illinois Prevention Research Center (IPRC) being developed at UIC. The IPRC is funded by the U.S. Centers for Disease Control and Prevention (CDC), as part of a program aiming to conduct innovative public health prevention research.

The PAUSE study is also included in the Managing Epilepsy Well Network.

Epilepsy is estimated to affect nearly 65 million people worldwide, with about one-third of them having difficulty controlling their seizures, even with medication. S

 

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