Sharing What We Have Learned: Healthy City Collaborative
Sharing What We Have Learned is sponsored by the Office of Community Engagement and Neighborhood Health Partnerships, Healthy City Collaborative, and the Office of Health Literacy, Prevention, and Engagement. We are pleased to highlight research and community engagement activities of UIC researchers. Each month we feature a researcher and important findings from their work. This information is shared in a ready-to-use format suitable for widespread distribution. If you would like more information about our efforts to share what we have learned, visit our website or email sabrina1@uic.edu
Dilip Pandey, MD, PhD, FAHA
Associate Professor
University of Illinois at Chicago
Department of Neurology and Rehabilitation
“Enhancing self-management and quality of life for adults with Epilepsy: PAUSE to Learn Your Epilepsy at UIC”
Introduction
People with epilepsy have diverse social backgrounds and educational skillsets; therefore, self-management education for improving their condition is challenging. The PAUSE study evaluated mobile technology-based personalized epilepsy self-management education intervention in improving self-management behaviors, epilepsy outcome expectations, quality of life and personal impact of epilepsy in adults with epilepsy.
Methodology
UIC Institutional Review Board approved PAUSE to Learn Your Epilepsy. Between October 2015 and March 2019, 112 people with epilepsy were recruited at the UI Health epilepsy outpatient clinic and consented to participate.
An Android-based application to provide tailored self-management education intervention was developed for PAUSE. An individualized eight-to-12 week education intervention, utilizing an internet-enabled computer tablet application with download customized to patient-specific educational needs from Epilepsy.com, was provided to the study participants. Participants progressed the learning modules of individualized educational program at their own pace and returned the study computer tablet at the end of intervention period.
Validated self-reported questionnaires were used to obtain outcome measures. Participants were assessed at baseline, the first follow-up at completion of the intervention, and the second follow-up at least three months after the first follow-up.
Conclusion
There were significant improvements in all self-management behaviors, self-efficacy, outcome expectancy, quality of life and personal impact of epilepsy measures from baseline to first follow-up. This study showed feasibility of a mobile-based personalized epilepsy self-management intervention in improving self-management skills and behavior, quality of life for people with epilepsy in clinical settings. This underscores a greater need for a community-based trial to test the effectiveness of personalized self-management education, such as PAUSE to Learn Your Epilepsy, in broader settings specifically for the unique needs of the hard-to-reach and hard-to-treat population of people with epilepsy.
Acknowledgements
Authors acknowledge Samreen Ahmed, MBBS, in preparing this article. UIC Center for Clinical and Translational Science supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003.
Funding
This study was funded Health Promotion and Disease Prevention Research Center and Managing Epilepsy Well Collaborating Center supported by Cooperative Agreement 5U48DP005010-05 from the Centers for Disease Control and Prevention. Educational grant to Dr. Dilip K. Pandey.
About Our Researcher
Pandey is experienced in conducting clinical trials, epidemiological and outcome studies. He is an associate professor who has performed data management and statistical analysis for both NIH and non-NIH sponsored studies. He also serves as the director of clinical research in the department of neurology and rehabilitation at the UIC College of Medicine Chicago. He also has an affiliate faculty appointment in the Division of Epidemiology and Biostatistics at the UIC School of Public Health.
