Smoother Epilepsy Care Transitions

At the 36th International Epilepsy Conference (IEC), held August 31 to September 3, 2025, in Lisbon, Portugal, epilepsy experts gathered to discuss several pertinent clinical questions, including the challenges of helping young patients with epilepsy move from pediatric to adult care. The session titled “Transition from Pediatric to Adult Care: Access to All?” chaired by adult neurologist Danielle Andrade, MD, highlighted how this pivotal stage of care often varies widely across regions and income levels. During the session, presenters examined real-world experiences, sharing both patient and health care provider perspectives on what makes a successful handoff to adult neurology.

Andrade herself presented findings from a 58-country survey conducted by the International League Against Epilepsy (ILAE) transition task force, revealing striking differences in available programs and resources.1 Other speakers explored the perceptions of young patients before and after leaving pediatric care, the disparities faced by low-, middle-, and high-income nations, and strategies to empower families and patients to advocate for better support. Collectively, the session underscored that consistent education, communication, and policy development may be essential to ensure all young people with epilepsy receive seamless, high-quality care as they enter adulthood.

Building on the themes discussed at the IEC session, a new iteration of NeuroVoices features an in-depth conversation with Andrade to discuss the key considerations for transitioning young adults with epilepsy to adult neurology care. Andrade, the co-chair of the ILAE Transition Task Force and director of the Adult Genetic Epilepsy Program at the University of Toronto, spoke specifically about patients heading off to college, covering the need for proactive patient education and practical tools to assess preparedness prior to the shift.

NeurologyLive: Discuss your presentation from EIC, what were the take-home messages?

Danielle Andrade, MD, MSc, FRCPC: Yes. We had a session on that, where we presented the findings from the first period of our task force. We conducted an international survey on transition to examine the state of transition in different parts of the globe. I presented on that, and my colleagues presented on other aspects, including the patient side of it, the patient’s experience, and possible suggestions for improvement.

What are some of the key considerations you would discuss with patients and their families when they are preparing to transition from pediatric to adult neurology?

I think the first thing I would say is: ask questions. Ask questions not only about the seizures, but also about triggers and lifestyle changes that could influence both seizure treatment and adverse effects. One of the things we see with patients going off to university is that it’s the first time they have a bit more freedom. With that freedom, sometimes they might get a bit excited with so much to do, but they may end up forgetting to take their medications. That’s what we call the perfect storm—when they stay up late studying or partying and then have to get up early to go to class or take a test. The combination of sleep deprivation, alcohol, and sometimes forgetting the medication is the perfect storm to trigger seizures. We always tell patients: be very careful and prioritize your sleep. Sleep is very important, and even though it’s the last thing students want to hear about, it’s still critical—especially for people with epilepsy.

How do you ensure the continuity of care for young adults with epilepsy as they move into a college setting?

Well, I think reproductive health is very important. This is a phase where the pediatric epileptologist might think the adult epileptologist will talk about this, and the adult epileptologist might think that the child epileptologist already talked about it—and the patient is not getting the information from anyone. It’s very important to talk to your patients about this. Even if they have to hear it twice—from both pediatric and adult neurologists—it’s better than not hearing it at all.

We know that antiseizure medications interfere with hormonal contraception. We also know that patients with epilepsy have a higher number of children outside a stable relationship. When you look at long-term outcomes of pediatric epilepsy, this is a significant issue. It cannot be stressed enough how important it is to talk to patients about reproductive health.

We have readiness questionnaires that evaluate a person’s preparedness to move from pediatric to adult care. These questionnaires help the patient identify the areas where they need help, as well as assist the health care team. Sometimes you think your patient is well-versed in certain things, but it turns out they are not and might need help with other areas—like calling for refills, reporting adverse effects of medications, or knowing what to do in certain situations. The readiness questionnaire is a very helpful tool during the transition.

Are there any other challenges that you see most often during this transition, and how do you work with patients to overcome them?

There are several challenges. One of them is coordinating all the specialists the person is seeing. It’s not rare for someone in pediatric care to see a neurologist, a psychiatrist, and sometimes a physiatrist. When they move to the adult side, they may only have the neurologist and lose contact with the other specialists. It’s very important to try to coordinate and help the pediatric specialists find their counterparts on the adult side.

The other issue is simply that it’s a different system, and sometimes not all the information is properly transferred. That’s why we say the transition should be ideal: in addition to preparing the patient, you prepare all the documentation that the new physician is going to need. Sometimes just copying and sending the whole chart can be challenging, because the new neurologist only has a short amount of time to see the patient and cannot look through 18 years of medical history. Again, the epilepsy transition forms are very useful in this sense.

Other challenges we see are with more rare forms of epilepsy that are mainly the domain of child neurologists. The adult neurologist might not be as familiar with these, but the knowledge is getting out there. There are more and more papers and studies about the long-term outcomes of childhood-onset epilepsy, especially genetic epilepsies.

Are there any other clinical insights that are pertinent to the topic at hand?

Well, I guess regarding the back-to-school topic, communication is essential. Ideally, you should be able to talk to the child neurologist who is referring the information to you and vice versa. That kind of collaboration is very helpful.

Regarding the global survey, it is very interesting. It shows that transition of care is very different in different places. We did see that there is a little bit more availability of transition programs in countries with higher income or in the global north compared to the global south. There are different barriers, but many of them include finances, education of both adult and pediatric neurologists, and opportunities to educate patients. The lack of national guidelines might be a problem, and the lack of integration of transition into the curriculum of neurology programs might be a barrier as well.

Transcript edited for clarity. Click here to view more NeuroVoices.