Empowering Connections: A Virtual Symposium for Enhancing Care for Children and Youth with Epilepsy

Summary Report

Project Background
Epilepsy is a brain disorder where a person has recurring seizures. Seizures – sudden events that cause temporary changes in physical movement, sensation, behavior, or consciousness – are caused by abnormal electrical and chemical changes in the brain. The type of seizure a person has depends on where the seizure occurs in the brain and how much of the brain is involved. Epilepsy is the most common childhood brain disorder in the United States, impacting 470,000 children and adolescents aged 0-17 years.
The American Academy of Pediatrics (AAP) has served as home to the National Coordinating Center for Epilepsy (the Center) since 2013. Through a cooperative agreement with the Health Resources and Services Administration’s (HRSA) Maternal Child Health Bureau (MCHB), the Center seeks to improve access to coordinated, comprehensive and quality care across the life-course for children and youth with epilepsy (CYE), particularly those who live in medically underserved and/or rural areas.
One way the Center seeks to realize this goal is by providing support, technical assistance (TA), and education to HRSA’s Transforming Health Care for Children and Youth with Epilepsy (THCCYE) grantees. The seven grantees receive funding from the MCHB to implement quality improvement (QI) projects related to the management and care of CYE, specifically related to the THCCYE’s 4 Global Aims: 1) telehealth; 2) health care transition; 3) shared decision-making; and 4) coordination, collaboration, and co-management between primary care and specialty providers. The project is currently in its 5th and final year.
Symposium Overview/Objectives
As a capstone to the 5 years of THCCYE grantee project implementation, the Center, with support from HRSA/MCHB, hosted Empowering Connections: A Virtual Symposium for Enhancing Care for CYE (the Symposium) on June 10, 2024. This 3-hour convening brought together over 70 individuals – including grantees and key partners within the system of services for CYE (Appendix A) – with the goal of further disseminating the important work of the grantees and the THCCYE project overall.
Symposium Objectives
• Provide THCCYE grantees an opportunity to share lessons learned, best practices, strategies that they have implemented within their projects, and opportunities for sustaining gains made.
• Engage participants in a discussion about how insights from THCCYE projects can be applied more broadly to children and youth with special health care needs (CYSHCN).
• Facilitate a conversation among attendees regarding how lessons learned from THCCYE projects can be utilized to help support the implementation of the MCHB Blueprint for Change for CYSHCN.
• The Symposium agenda – designed by the Center staff, in collaboration with a subset of THCCYE grantees and facilitators from consulting firm Commonality, Inc. (Appendix A) – comprised a mix of didactic, case-study style presentations, facilitated discussions, and panel conversations (Appendix B) exploring THCCYE grantees’ work through the lens of the project’s 4 Global Aims. This summary serves to capture the
Key Learnings
The Symposium proceedings illuminated several key learnings, including:
• THCCYE’s 4 Global Aims – 1) telehealth, 2) health care transition, 3) shared decision-making, and 4) coordination, collaboration, and co-management between primary and specialty providers – are essential components for the delivery of quality care to CYE and their families.
• Health equity can be advanced by providing evidence-based, culturally congruent care in a patient’s primary language; this care should be inclusive of culturally relevant resource and education dissemination.
• It’s essential to include the voice of CYE and their families in epilepsy care intervention design and innovation, as well as to include CYE and their families in the co-development of surveys, resources and educational materials.
• Providers must meet CYE patients and families where they are and empower them as leaders in shared decision-making about their own care.
• There is much value in partnering with community leaders, faith-based organizations, and other community organizations that can serve as trusted messengers in engaging CYE and their families that might otherwise not be reached through traditional health system channels.
• It is essential to fully integrate new workflows into organizational infrastructure, to make sure that THCCYE innovation does not lapse when the grant period ends.
• To ensure successful health care transition, CYE and their families must receive early (beginning at age 12) and frequent individualized support. No two transitions are alike, even within the same diagnosis.
• To increase collaboration between PCPs and epilepsy specialists, providers must work closely together to build relationships, open lines of communication, troubleshoot technical difficulties, and navigate the demands and constraints of each team’s capacity.
• Telehealth is an important tool that can benefit CYE and their families, as it reduces a range of barriers to care including transportation, time, geography, patient comfort, and more.
• There are lessons learned and best practices from these projects that can be applied more broadly to all CYSHCN populations.