Epilepsy: Transitioning From Pediatric to Adult Care
Given the transition from pediatric to adult care in the case of epilepsy, experts consider who and what needs to be involved to optimize the process.
Michael R. Sperling, MD; Trevor J. Resnick, MD; Jesus Eric Pina-Garza, MD; Kathryn A. Davis, MD, MS, FAES
PUBLISHED March 07, 2019
Michael R. Sperling, MD: We’ve got a few other topics to cover. In transitioning from pediatric to adult care, Trevor, what do you think are the important things that we have to do?
Trevor J. Resnick, MD: I think often when you are transitioning, it’s usually when you’ve had a relationship with a family and have been treating the epilepsy for a long period of time. And I think it’s important to actually facilitate the connection with the transitioning physician. It’s not just a matter of the data and the notes. It also relates to communication, family expectations, and the patient’s own specific situation. And it’s really hard and time-consuming to get those data across. But I think to make the transition as seamless as possible, it’s important to do that as much as you can.
Michael R. Sperling, MD: Eric, what practice do you have?
Jesus Eric Pina-Garza, MD: It’s very variable. Well, I think that the topic is challenging. If you go to an American Epilepsy Society [AES] Annual Meeting, there have been lectures for the last 10 years about transition of care. And all the suggestions…don’t seem to have an impact. We still have a challenge. And if you asked pediatric neurologists, we tend to keep a lot of pediatric patients until adult life because we detect those patients who have a very difficult time transitioning.
So 1 of the ideas that I had that I haven’t implemented yet is the connector. So I think that it’s very hard for a patient with a chronic illness with a lot of needs to lose their pediatrician and their pediatric neurologist. They’re your family. So 1 of the ideas that I have is to try to involve the meds, peds, or the family doctors to be part of the medical care early in life. So instead of waiting until they’re adults, maybe take over at age 15 when it’s predicted that they’re going to have a lot of problems, so they can serve as liaisons with their own neurologist. That’s a project that I actually want to present to the AES, but that’s because we need something that continues to hold the hands of these families, they have a lot of needs.
Michael R. Sperling, MD: Kate, what proportion of patients would you say come to you, graduating from the child neurologist to the adult, actually having some sort of an organized transition plan in place?
Kathryn A. Davis, MD, MS, FAES: Fortunately, that’s actually changed substantially recently. I think for a few reasons. One, the electronic medical records are increasingly talking to one another. And so instead of 5 years ago, when a very complex pediatric patient would show up for their patient visit expecting me to have all their records, which hadn’t been faxed or hadn’t been received, and we know nothing about them, now it’s much more frequent that I can look up in our electronic medical record and see other providers’ notes.
Another reason is at the Hospital of the University of Pennsylvania, we have a collaboration between 1 of our nurse practitioners and the Children’s Hospital of Philadelphia. They’ve been working on a transitions program. And I think that has been really helpful. The key feature of that program is that when patients are referred over for a transition, our nurse practitioner is actually going into their chart before they come in, preparing for the office visit, and messaging the provider that’s going to see them within the record. We have established collaborators across all the main comorbidity subtypes that patients need. Often they need a rheumatologist, they need a gastroenterologist. They need other types of specialties, and there are physicians who have interests in taking care of the kinds of patients who we take care of within all those fields—a dermatologist, for example. So the patients come and they are keyed in quickly to the other subspecialties. And then, after the patient is initially seen by me or 1 of my colleagues, they automatically get a second follow-up with a nurse practitioner within a month to help smooth out that transition.
I would say that it’s really helpful if patients are transitioned earlier in their adult years. One of the big reasons is that, at least in the region that I practice in, a lot of governmental services they get as children go away when they become adults. And if we have a longer period of time to prepare for that, that is really helpful. So the worst scenario is they get transitioned later at the same time that all that additional assistance is pulled as well.