Abstract
Purpose: People with epilepsy (PWE) come from a wide variety of social backgrounds and educational skillsets, making self-management (SM) education for improving their condition challenging. Here, we evaluated whether a mobile technology-based personalized epilepsy SM education intervention, PAUSE to Learn Your Epilepsy (PAUSE), improves SM measures such as self-efficacy, epilepsy SM behaviors, epilepsy outcome expectations, quality of life (QOL), and personal impact of epilepsy in adults with epilepsy. Methods: Recruitment for the PAUSE study occurred from October 2015 to March 2019. Ninety-one PWE were educated using an Internet-enabled computer tablet application that downloads custom, patient-specific educational programs from Epilepsy.com. Validated self-reported questionnaires were used for outcome measures. Participants were assessed at baseline (T0), the first follow-up at completion of the PWE-paced 8–12-week SM education intervention (T1), and the second follow-up at least 3 months after the first follow-up (T2). Multiple linear regression was used to assess within-subject significant changes in outcome measures between these time points. Results: The study population was diverse and included individuals with a wide variety of SM educational needs and abilities. The median time for the first follow-up assessment (T1) was approximately 4 months following the baseline (T0) and 8 months following baseline for the second follow-up assessment (T2). Participants showed significant improvement in all SM behaviors, self-efficacy, outcome expectancy, QOL, and personal impact of epilepsy measures from T0 to T1. Participants who scored lower at baseline tended to show greater improvement at T1. Similarly, results showed that participant improvement was sustained in the majority of SM measures from T1 to T2. Conclusion: This study demonstrated that a mobile technology-based personalized SM intervention is feasible to implement. The results provide evidence that epilepsy SM behavior and practices, QOL, outcome expectation for epilepsy treatment and management, self-efficacy, and outcome expectation and impact of epilepsy significantly improve following a personalized SM education intervention. This underscores a greater need for a pragmatic trial to test the effectiveness of personalized SM 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 PWE.
| Original language | English (US) |
|---|---|
| Article number | 107228 |
| Journal | Epilepsy and Behavior |
| Volume | 111 |
| DOIs | |
| State | Published - Oct 2020 |
Funding
We would like to acknowledge the UIC Center for Clinical and Translational Science ; the project was supported by the National Center for Advancing Translational Sciences, National Institutes of Health , through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. An educational grant providing financial assistance for additional tablets and internet connectivity was provided by UCB, Inc. Educational Grant # EDU-2016-115149 to Dr. Dilip K. Pandey. This journal article is a product of a Health Promotion and Disease Prevention Research Center and a Managing Epilepsy Well Collaborating Center supported by Cooperative Agreement Number 5 U48DP005010-05 from the Centers for Disease Control and Prevention. The findings and conclusions in this journal article are those of the author and do not necessarily represent the official position of the Centers for Disease Control and Prevention.An educational grant providing financial assistance for additional tablets and internet connectivity was provided by UCB, Inc. Educational Grant # EDU-2016-115149 to Dr. Dilip K. Pandey. We would like to acknowledge the UIC Center for Clinical and Translational Science; the project was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We would like to acknowledge the support of the MEW Network and the collaborative support of their member programs and teams. We acknowledge the members of the PAUSE study group: Nadia Nabulsi, Katharine Ozenberger, and Henna McCoy, and the support of the staff at the UIH Epilepsy clinic and Gina Gebhardt. We also acknowledge the support of the Epilepsy Foundation of America and staff at the Epilepsy Foundation of Greater Chicago: MaryJo Perlongo and Leigh Schommer. This journal article is a product of a Health Promotion and Disease Prevention Research Center and a Managing Epilepsy Well Collaborating Center supported by Cooperative Agreement Number 5 U48DP005010-05 from the Centers for Disease Control and Prevention . The findings and conclusions in this journal article are those of the author and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
Keywords
- Epilepsy
- Mobile based technology
- Personal impact of epilepsy
- Quality of life
- Self-management
- Underserved
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
- Behavioral Neuroscience