Transition Care to Adult Epilepsy Centers

Epileptologists at University of Toronto and University of Saskatchewan, Canada, evaluated the complexity of epilepsy patients transitioned from child to adult care between tertiary centers compared to patients transferred from the community. Patients aged from 18 to 25 years were divided into 2 groups: Group 1 comprised 170 patients referred from the pediatric tertiary center; and Group 2 had 132 patients referred from the community. Retrospective comparison of patients in the 2 groups found that patients in Group 1 had earlier seizure onset, longer epilepsy duration, and more patients with symptomatic etiologies, epileptic encephalopathy, and cognitive delay (p<0.001). Group 1 patients required more referrals to other specialties, and more frequent treatment with polytherapy, epilepsy surgery, ketogenic diet, and vagus nerve stimulator (p<0.001). Adult neurologists (n=86) and pediatric neurologists (n=29) surveyed indicated that adult neurologists have lower levels of confidence in diagnosing and treating severe forms of childhood-onset epilepsies (p<0.001) and epilepsies associated with cognitive delay (p<0.001). [1]

COMMENTARY. Patients from tertiary centers present more complex needs and require more resources than age-matched patients from the community, and adult neurologists feel less confident in diagnosing and treating adult patients transferred with some childhood-onset epilepsies. The researchers propose that adult epileptologists should receive training in childhood-onset epilepsies. Alternatively, pediatric epileptologists should continue to follow more complex childhood-onset epilepsies in the adult or pediatric epilepsy clinic, provided the patient is seen regularly by an internist to attend to general systemic needs. [2]

The most challenging childhood-onset epilepsies for adult neurologists are the epileptic encephalopathies with intractable seizures and cognitive delay. The well-known syndromes include West, Dravet, and Lennox Gastaut [3]. Patients with Lennox-Gastaut syndrome followed for >10 years have severe cognitive delay in 75-99% cases and refractory seizures in 92%.