Authors :
Presenting Author: Wei Zhao, MD, MSc – McGovern Medical School, UTHealth Houston
Siefaddeen Sharayah, MD – Washington University School of Medicine
Michael Butler, MD – Missouri Baptist Medical Center
Katie Forsman, MD – Washington University in St. Louis School of Medicine
Kaley Marcinski Nascimento, MD – Washington University in St Louis
Guerriero Rejean, DO – Washington University in St. Louis School of Medicine
Rikke Moller, PhD – Danish Epilepsy Center Filadelfia
M. Scott Perry, MD – Cook Children’s Physician Network
Fábio Nascimento, MD – Washington University School of Medicine
Rationale:
Approximately 50% of children with epilepsy will continue to have seizures as adults and, therefore, require adult neurologic care. The process of progressing care from the pediatric realm to the adult setting is challenging for patients and their caregivers, clinicians, and healthcare systems. To address this gap, the concept of “transition of care” was created. Here, we present preliminary data from a pilot epilepsy transition program (ETP) developed and implemented at the Washington University School of Medicine.Methods:
We developed an ETP through a collaborative effort between the adult and pediatric epilepsy clinics at the Washington University in School of Medicine in St. Louis, MO. The Program was led by one adult epileptologist (FN), who worked closely with the institution’s pediatric epilepsy group. The program was launched in July 2022 and concluded in July 2025, when the program director assumed a new role within the department.
We reviewed the charts of all patients who were seen in the ETP and whose first visit in the program occurred between July 1, 2022 and January 1, 2025. We retrospectively collected these patients’ demographics, clinical characteristics, and physician recommendations made at the first visit in the ETP. The latter included modifications to antiseizure therapies and ordering of tests and/or referrals to other (sub)specialties. Study data was summarized using descriptive measures to provide an overview of the program including its metrics, physician recommendations, and patients’ demographic and clinical features. This study was approved by the institution’s review board.
Results:
We included 135 patients in the study (mean age was 22, range 16-43); most were White (81%) and non-Hispanic (96%). Ninety-one percent of patients had epilepsy, and roughly one-third of these patients (35%) had refractory seizures. The most common epilepsy etiologies were unknown (49%), structural (28%), and genetic (28%). Patients predominantly resided in MO and IL (Figure). The majority of referrals were made by attendings (76%), and the referrer practice was typically pediatrics (72%). Referrals largely originated from neurology (76%), with most coming from epilepsy (58%) and the remainder from general neurology or other neurology subspecialties (42%). The average duration between the referral and the first ETP clinic visit was 170 days (median 149 days). Following the first ETP visit, 43%, 38%, and 20% of patients were ordered brain MRI, EEG, and epilepsy monitoring unit evaluations, respectively. Nine and 10% of patients were referred to other subspecialties within or outside neurology, respectively.Conclusions:
This study provides an in-depth description of a patient population undergoing transition of care in a dedicated epilepsy transition program within an academic institution, including their demographics, clinical characteristics, and the common interventions recommended at first evaluation. These findings can inform the development and refinement of epilepsy transition programs across the U.S., help allocate resources efficiently, and support cost analyses to optimize successful transitions to adult care.
Funding: None