Improving the Transition From Pediatric to Adult Epilepsy Care

Body text: Transitioning from pediatric to adult epilepsy care involves more than changing clinicians. For patients with complex epilepsies, particularly developmental and epileptic encephalopathies, years of knowledge about seizure patterns, comorbidities, treatment responses, and individual triggers may reside with a pediatric team that has cared for the patient and family over a significant period of time.

In this NeurologyLive® Insights series, Jacqueline French, MD, professor of neurology at NYU Grossman School of Medicine, co-director of epilepsy research and epilepsy clinical trials at NYU Langone Health, and chief medical and innovation officer of the Epilepsy Foundation, examines areas across the epilepsy care continuum where greater clinical clarity and coordination can improve patient management. The series explores disease burden, diagnosis and classification, diagnostic testing, comorbidities, care transitions, and the growing influence of genetics.

In this episode, French examines why the pediatric-to-adult transition can be particularly difficult for patients and caregivers. She discusses differences between pediatric and adult models of care, the challenge of transferring years of individualized clinical knowledge to a new provider, and strategies for creating stronger handoffs, including direct clinician communication and the use of an epilepsy passport to preserve important information throughout a patient's care journey.

The transition between pediatric care and adult care is something that has been very problematic for a very long period of time. Part of it is that pediatricians are attuned to comorbidities and are looking for them in a different way than the adult epileptologist usually looks for those comorbidities.

They are very comfortable with treating a lot of those comorbidities themselves, although the child may need to be sent to other practitioners as well. They may be very comfortable with treating the GI problems, behavioral problems, and other problems.

The parents of a child, particularly with a developmental and epileptic encephalopathy, where I think the transition is the hardest, will come to rely on the pediatrician or pediatric neurologist to be sort of their holistic carer. Then, they get transitioned to an adult epileptologist, and that's just not the culture or practice in an adult neurology or epilepsy center.

They'll end up being sent here for this, there for that, and somewhere else for something else, and that can be very problematic for them rather than receiving all of their care from their trusted provider.

In addition, a lot of times there has been a very long relationship with that pediatric epileptologist or neurologist. Now, they have to start with someone else who they may not trust or may not think knows their child. They're probably right. There may be very subtle things that are particular to that child in terms of when they get into trouble or what happens when they get sick.

Sometimes, in a child with a developmental and epileptic encephalopathy, illness will actually improve seizures. Other times, it will make seizures worse. Other times, that child may have ended up in the emergency room or in status epilepticus because of an intercurrent illness. There is so much knowledge that now rests with this other provider, and it's very difficult to transfer that over.

Obviously, the best handoff is a very long note and perhaps also a call between the pediatric epileptologist or neurologist and the person who is now accepting the care, so that they understand those things.

Something that is more common in Europe, but probably should be more common in the United States, is something called an epilepsy passport. As a child, or even an adult, goes through their life and their history of seizures, there is an ever-growing document that records what medications they've been on, what they failed and why they failed it, what diagnostic tests have been done, and any other very important pertinent information.

That way, whatever clinician that child or adult goes to, they can hand off that epilepsy passport and transmit a lot of that information.