Ahmed T. Abdelmoity, MD, MBA, MS, FAAP, FAES
Melva Dessenko O'Donnell Endowed Chair in Neurology; Vice President Clinical Access, Medical Administration; Division Director, Neurology; Associate Chair, Department of Pediatrics; Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Assistant Professor of Pediatrics, University of Kansas School of Medicine
Full BiographyJean-Baptiste Le Pichon, MD, PhD, FAAP
Madison Lauren Sargent Endowed Professorship in Neurology/Angelman Syndrome; Associate Division Director, Child Neurology; Director, Neuroscience Research Program; Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Assistant Professor of Pediatrics, University of Kansas School of Medicine
Full BiographyAfter successfully completing a 5-year, $2.08 million Health Resources & Services Administration (HRSA) grant addressing Epilepsy care disparities in the Midwest, Ahmed Abdelmoity, MD, MBA, MS, FAAP, FAES, and Jean-Baptiste Le Pichon, MD, PHD, FAAP, Neurology, have received a five-year, $2.25 million Transition for Youth with Autism and/or Epilepsy Demonstration Projects grant from HRSA.
The funding is being used for their project, “ENTRY TRAC (Epilepsy and Neurology Transition Resources for Youth to Ready Adult Care)”. The goal is to create a patient- and family-centered transition program, strengthen the healthcare system's capacity to transition care effectively, and empower youth with epilepsy and special needs (YES) through a responsive feedback-driven improvement process.
As Drs. Abdelmoity and Le Pichon explain, transition of care (TOC) is the process by which youth are transitioned from pediatric to adult medicine. This process can be difficult for many youths and their families. This is especially true of those with complex medical needs, such as epilepsy and other special needs.
Epilepsy is one of the most common neurological disorders. Many of these children have special needs, including learning disabilities and other health issues. For these populations, TOC can be especially complex and traumatizing. While there are many organizations that assist with TOC, the process is fragmented, making it difficult for families to access care in a seamless and fluid way.
Drs. Abdelmoity, Le Pichon, and their team aim to develop a framework to support youth with epilepsy and special needs during TOC.
“Our goal is to create a framework that facilitates a smooth TOC process while addressing the diverse needs of both the youth and their families, encompassing medical, legal, societal, and emotional aspects,” said Drs. Abdelmoity and Le Pichon. “Acknowledging that many essential components are already in place but dispersed across various organizations at local, regional, and national levels, our proposed framework offers an integrated solution.”
It begins at the age of 13, marking the initiation of the transition process with a focus on education. This phase aims to equip youth and their families with the necessary knowledge and skills to navigate TOC effectively. Through tailored educational interventions, they will enhance their ability to articulate all needs, including diagnoses, medications, and social needs, thereby bolstering their self-efficacy. The legal learning skills will include applying for the least restrictive options for guardianship. Financial skills will address issues with medical insurance, employment, and other available governmental assistance. Societal skills target the ability to live independently.
“Affective skills are geared to prepare the family to enter the adult world, often requiring letting go of strong emotional bonds,” Drs. Abdelmoity and Le Pichon explain.
The second phase of the project involves implementation, taking place between the ages of 17 and 21, marking the actual physical transition to adult care. This crucial step hinges on a “warm hand-off,” ensuring a seamless transfer by facilitating at least one joint visit with both pediatric and adult providers present.
The final stage of the proposal focuses on ensuring sustainability. The overarching aim of establishing this framework is to create a model easily adaptable to other diseases and healthcare institutions. For widespread adoption, it is imperative to demonstrate its benefits for all stakeholders, including youth and their families, healthcare providers, and the medical system as a whole.
Additionally, it must be proven to be financially viable.
“This project has been meticulously designed with measures in place to objectively demonstrate the benefits across all affected levels. We aim to illustrate that implementing this TOC framework will not only benefit youth and their families but also enhance medical care in a fiscally responsible manner, ultimately contributing to the betterment of society as a whole,” said Drs Abdelmoity and Le Pichon.
Other team members on this project include Douglas Blowey, MD, Nephrology; Timothy Corden, MD, Research Learning Center; Emily Cramer, PhD, Health Services & Outcomes Research; Amanda Deacy, PhD, Gastroenterology; Erin Fecske, DNP, APRN, Neurology; Paul Glasier, PhD, Neurology; Luke Harris, MBA, Integrated Care Solutions; Stephanie Horton, Neurology; Gina Jones, DO, Neurology; Kadriye Lewis, Ed.D, Graduate Medical Education; Stephanie Pratt, LMSW, Social Work; Emily Thorpe, M.Ed., Office for Community Impact.