Transitioning to adult neurology for youth with epilepsy is defined as the purposeful, planned process that addresses their medical, psychosocial, and educational/vocational needs as they move from child-centered to adult-oriented healthcare systems. Youth with intellectual disability and intractable epilepsy face a much more challenging transition, as many adult neurologists feel discomfort with treating this population. This discomfort stems from the need to address complex comorbidities along with the myriad of social issues, such as legal custody determinations and family dynamics.
Methods:
We evaluated the clinical and demographic variables of youth with epilepsy aged 18 years and above that can affect the transition to adult neurologists. This was a single-site retrospective study at the Pediatric Neurology Clinic at Dayton Children’s Hospital (DCH). Inclusion criteria included patients 18 years and older with a diagnosis of epilepsy who were being managed at DCH between 12/01/2021 to 5/31/2022. Variables collected included patient demographics, insurance, number of hospitalizations and Emergency Department (ED) visits five before and after the age of 18 years, number of anti-seizure medications, types of medications, clinical presentation and duration of epilepsy, and comorbidities.
Results:
The median age of patients was 20.9 years; 48% were female, the majority were white (77%) and not Hispanic or Latino (97.6%). Half of the patients had public insurance (55%) while 45% had private insurance. 14.3% had autism spectrum disorder (ASD), 20.7% had cerebral palsy, 36% had intellectual disability and 41% had psychiatric comorbidities. The most common type of seizure was generalized tonic-clonic seizures (59%) and the majority of patients (57.6%) had zero to one seizures in the past year. Documentation of discussion of the transition to adult care was present in only 4% of patients before 18 years of age compared to documentation present in 35% of patients after 18 years of age. 70.2% of patients were on polypharmacy with anti-seizure medications and 26.4% of patients were on psychoactive medications. The median time from the first neurology visit to the most recent neurology visit was 9.2 years. 58% of patients did not have any ED visits between 18 to 23 years of age.
Conclusions: At a free-standing children’s hospital, patients 18 years of age and above with epilepsy had significant comorbidities including ASD, cerebral palsy, intellectual disability, and psychiatric diagnosis. The majority of the patients were on polypharmacy and were well controlled with no seizure-related ED visits and with a median follow-up of two years. Documentation of transition-related discussion was poor before 18 years of age and improved after 18 years. Epilepsy patients who are not transitioned at 18 years of age may represent a distinct sub-group and need to be identified early with a clear transition plan.
Funding: This research received no specific grant from any funding agency in the public or commercial or not-for-profit sectors.