Rationale: Epilepsy patients need assistance in the areas of self-management, treatment, and seizure control. The 2012 Institute of Medicine report on unmet needs of epilepsy patients determined that community health worker (CHW) involvement in self-management programs offers the following benefits: culturally appropriate health education, healthcare system navigation, social and moral support, and resource linkages. In addition, many epilepsy patients have unmet needs associated with social determinants, including employment discrimination, higher rates of injury and cognitive impairment, as well as social isolation. There is an increased need for cooperative, interdisciplinary patient navigation to support people living with epilepsy. Methods: CDC launched a national campaign to increase the utilization of nontraditional healthcare providers (NTHP), such as community health workers (CHWs), to address unmet healthcare-related needs of epilepsy patients. CHWs were identified as key NTHP with specialized skills sets who, with culturally competent epilepsy-specific training, are ideal practitioners to support epilepsy patients manage their disorder. Epilepsy Foundation offices in Texas and Illinois used a CDC developed curriculum to train CHWs to work with neurologists, epilepsy specialists and epilepsy-focused healthcare systems, to address epilepsy disparities in Chicago and Houston. Both offices recruited CHWs with experience in health education, cultural competency and healthcare navigation. The University of Texas School of Public Health, Rush University Medical Center, and AMITA Health, formerly known as Alexian Brothers Health System, supported the recruitment and placement of CHWs in clinics in Houston and Chicago. Results: Over 60 CHWs were trained in supporting people with epilepsy among the two states, using the added incentive of continuing education units for CHWs through the Texas Department of State Health Services. CHWs used the Epilepsy Self-Management Scale in Illinois to measure knowledge, attitudes and/or behavior change in patients, with the most improvement related to stress management and medication adherence. In Texas, use of the Management Information & Decision Support Epilepsy Tool (MINDSET) by CHWs indicated a greater degree of depression and recognition of the need for lifestyle modifications to improve self-management among clients, allowing for earlier intervention evidence-based programs to address co-morbidities. Conclusion: The use of CHWs has improved outcomes related to the wide variety of challenges affecting quality of life for people living with epilepsy. The ongoing efforts of the NTHP initiative in both states is expected to be sustained through use of the Train-the-Trainer model for continued use of the CHW Epilepsy Curriculum, in addition to advocacy efforts for reimbursement for CHW epilepsy work through the Medicaid and Medicare systems.
- Identify challenges related to co-morbidities faced by people with epilepsy
- Describe how community health workers address challenges for people with epilepsy in coordinated care
- Identify best practices for integrating CHWs into coordinated care for people with epilepsy