A case study in science-to-service application of epilepsy self-management

Area of Science:

• Dissemination and Implementation Science
• Epilepsy Self-Management (ESM)
• Public Health Interventions

Background:

• Epilepsy self-management (ESM) aims to reduce seizures and improve overall health for people with epilepsy (PWE).
• The Self-management for people with epilepsy and a history of negative health events (SMART) program is an 8-session, group-format, remotely delivered ESM intervention.
• This report details the development, testing, and scale-up of SMART, leveraging expertise and established infrastructure from social service agencies supporting PWE.

Purpose of the Study:

• To describe the evolution and implementation of the SMART program.
• To evaluate the program's reach, effectiveness, adoption, implementation, and maintenance using the RE-AIM framework.
• To assess participant engagement, acceptability, and changes in health outcomes.

Main Methods:

• A case-study dissemination and implementation (D&I) science-to-service model was employed.
• The RE-AIM framework guided the evaluation of individual and setting-level outcomes.
• Performance evaluations included representativeness, attendance, acceptability, and changes in seizure frequency, mental health (PHQ-9, GAD-7), and quality of life (QOLIE-10).

Main Results:

• SMART is implemented through a collaboration of epilepsy-focused nonprofit organizations and a university team, expanding to 13 U.S. states.
• 17 Nurse and Peer Educators were trained; 10 Peer Educators had a mean age of 51.1 years.
• Among 86 participants (mean age 37.7 years), 73.9% were women and 20.2% were African-American. Pre-SMART, 52.2% reported seizures in the last 30 days. Mean attendance was 5.7 sessions. Preliminary data showed trends for improved quality of life (p=0.07).

Conclusions:

• The RE-AIM framework facilitates the implementation of ESM by linking intervention developers and community partners.
• People with epilepsy (PWE), despite facing health barriers like frequent seizures, can successfully engage in the SMART program.
• Challenges in collecting post-program follow-up data limit patient-level evaluation, but preliminary findings indicate a potential for improved quality of life.