Abstracts

A Case Study in Science-to-service Application of Epilepsy Self-management

Abstract number : 2.351
Submission category : 13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year : 2022
Submission ID : 2204475
Source : www.aesnet.org
Presentation date : 12/4/2022 12:00:00 PM
Published date : Nov 22, 2022, 05:25 AM

Authors :
Martha Sajatovic, MD – Case Western Reserve University School of Medicine; Kelley Needham, Program Director – Epilepsy Association; Peggy Beem Jelley, Program Director – Epilepsy Association of Western and Central Pennsylvania; Kathy Schrag, Program Director – Epilepsy Alliance Ohio; Julie Rentsch, Research Manager – Case Western Reserve University School of Medicine; Jessica Black, Research Coordinator – Case Western Reserve University School of Medicine; Kaylee Sarna, Data Analyst – Case Western Reserve School of Medicine; Russell Glasgow, Research Professor of Family Medicine – University of Colorado Anschutz Campus; Gena Ghearing, Clinical Associate Professor – University of Iowa

Rationale: Epilepsy self-management (ESM), the overall approach of reducing seizures and optimizing whole-health, is a targeted approach to improve population health for people with epilepsy (PWE). Self-management for people with epilepsy and a history of negative health events (SMART) is a group-format, remotely-delivered ESM that can reduce seizures and other health complications. This report describe the evolution of SMART production, testing and scale-up, taking advantage of ESM developer expertise and the skills, community relationships and infrastructure established by social service agencies that deliver care and support to PWE.

Methods: This is a case-study dissemination and implementation (D&I) science-to-service model using the RE-AIM framework approach (Reach, Effectiveness, Adoption, Implementation, and Maintenance) which focuses on five dimensions of individual- and setting-level outcomes important to program adoption, impact and sustainability. Performance evaluations include demographics, information on epilepsy history including age of epilepsy onset and past 30-day seizure frequency, psychiatric diagnosis, selected social determinants of health, the Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7) and 10-item Quality of Life in Epilepsy Scale (QOLIE-10).

Results: SMART D&I is implemented through a collaboration of three unique regional, epilepsy-focused nonprofit social service organizations, a university team and the U.S. Centers for Disease and Control and Prevention (CDC). Together, this collaborative is expanding and delivering SMART to PWE, prioritizing young adults (aged 18-24 years) and those who live in rural communities. Thus far, we have trained 10 new Nurse and Peer Educators (PEs). PEs have a mean age of epilepsy diagnosis of 29 years.  SMART participants thus far have a mean age of 42.15 years (SD 15.83), n=15 women (75%), n=6 African-American (30%), n=13 Non-Hispanic White (65%), and n=1 Hispanic/Latino (5%). Mean age of epilepsy diagnosis among SMART participants is 21.47 years (SD 17.08) with a mean past 30-day seizure frequency of 4.73 (SD 4.99). Mean PHQ-9 score was 8.31 (SD 6.68). In the first cohort (N=10), one PWE dropped out prior to SMART groups beginning and 1 dropped out after SMART session one.

Conclusions: While ESM is known to benefit a variety of health outcomes among PWE, ESM is, unfortunately, not a standard of care for PWE in many clinical and community settings.  A successful D&I model for application of an evidence-based ESM approach using a RE-AIM framework links efficacy trial developers and community partners to help the potential for advances in science to become translated to service for PWE. 

Funding: Centers for Disease Control and Prevention
Health Services (Delivery of Care, Access to Care, Health Care Models)