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Newswise — When a child with epilepsy ages out of pediatric healthcare, the shift to adult epilepsy care can be complex. A recent survey of young people with epilepsy found that 25% of young adults still saw pediatric neurologists for their epilepsy care, and only 4% of survey respondents said they received clear instructions during the transition process. Sharp Waves spoke with Dr. Danielle Andrade about the importance of transition care in epilepsy.
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Podcast Transcript
[00:00:00] ILAE: When a child with epilepsy ages out of pediatric healthcare, the shift to adult epilepsy care can be complex. Planning this transition and coordinating care can prevent gaps that can affect quality of life and possibly lead to health crises. A recent survey of people with epilepsy found that transition care was lacking. One-fourth of young adults with epilepsy were still followed by their pediatric neurologists and only 4% said they received clear instructions during the transfer of care process. Sharp Waves spoke with the paper’s senior author about the results and their implications.
[00:00:44] Dr. Danielle Andrade: I'm Danielle Andrade. I'm an adult neurologist specializing in epilepsy. I'm the director of the medical epilepsy program at University of Toronto. And I'm also the director of the adult genetic epilepsies program. I am the former. Chair in the task force for transition of care from childhood to adult. And now I am a co-chair in the same task force.
[00:01:17] ILAE: Excellent. Well, that's a perfect segue into our topic, which is transition care. There was a recent paper on transition care and you were the senior author; that's what we're here to talk about. If you could maybe set the stage a little bit for people who aren't familiar with transition care? What is it and why is it important in epilepsy?
[00:01:42] Dr. Danielle Andrade: Okay, so I think one of the important things is to make sure we understand the difference between transition and transfer of care.
So when patients in the pediatric system grow old and it's time for them to move to the adult system, many times, they are just transferred. Their medical records are sent to the adult neurologist, and they are told to go to the adult neurologist to receive their care going forward. Transition is different.
Transition, you want to prepare the patient and the family to make sure they are as comfortable as possible in the adult system and they receive the best possible care. So when you think about transitioning a patient, it's usually a long process. It should start by the age of 12 to 13 years if the person is going to leave the pediatric system at the age of 18. So you need some time to prepare for that.
Things you want to do in this period where you are preparing is make sure the patient and the family understand their diagnosis, so if they end up landing in an adult emergency department, they are able to say, “I have epilepsy caused by this problem. My usual medications are this. I have allergies to those medications” and things like that.
Also, you want to teach this young adult how to communicate with the medical system. In the pediatric system, usually this communication is done by the parents or caregivers. When they move to the adult system, they should be able to take care of that, allowing for their intellectual capacity.
Certain patients will be dependent on their parents and caregivers, but those that have normal or near normal intelligence, they should be able to communicate well with their new team of healthcare professionals. So things like saying, “I'm running low on this medication, I'm going to need a refill,” rather than not getting the refill, running out of the medication, having a seizure, then calling and saying, “I had a seizure because I was off medication for two weeks because I ran out” and this kind of thing.
You want to prepare youth also to communicate when they're having side effects. They know how to contact their health care team and communicate about side effects of medications and things like that. There's also the legal, social, and educational aspects. So, for instance, you want to talk about things like pregnancy, interaction between anti-seizure medications and birth control. You want to talk about driving regulations. In patients that have intellectual disability, I have conversations about what school is going to be like after they leave the pediatric system, do they need any special housing, is there a need to get a guardianship or power of attorney, things like that, which in the pediatric system, you don't worry about that. The caregiver brings the patient to the hospital and they make the decisions, but things are different when they are in adult care.
All of those things have to be thought about in advance and the patients and families have to be prepared for that. All this preparation is what we call transition.
The other important piece of transition is that this is an excellent opportunity to reinvestigate and rethink the diagnosis and treatment.
Sometimes patients have been receiving the same treatment for many years. And they had a very thorough investigation, but that was 10, 15 years ago. So, this is a time to think again, should we reinvestigate? Should we do genetic tests or update the genetic tests? Are these events really epileptic seizures or might something else be going on, on top of the seizures? And we are treating those paroxysmal events with thinking they are seizures, but they might be something else. So it's an excellent time, this period before leaving the pediatric system, this period of transition is an excellent time to rethink diagnosis and treatment.
[00:06:09] ILAE: Excellent. Thanks. So the study that you did was a survey-based study. Can you talk a little bit about how you collected the data and what you were looking for?
[00:06:23] Dr. Danielle Andrade: We wanted to reach out to patients that are not part of academic centers so we would have an idea of how transition is or not being done in places outside academic centers.
We went to the Epilepsy Awareness Day in Disneyland, which is an event for patients with epilepsy, and we distributed the questionnaire there. In addition, we sent the questionnaires to a few parent organizations like the Lennox Gastaut Syndrome Association, Dravet Syndrome Association, and a few other parent organized or patient organized groups.
This was, of course, a volunteer anonymous survey. We got 56 responses. That were equally matched between patients under the age of 18, so ones that were still in the pediatric system and those that were 18 or older that had already moved to the adult system.
[00:07:23] ILAE: What were the most surprising or interesting results that you found?
[00:07:31] Dr. Danielle Andrade: So some of the things that we saw is that many patients lost access to certain specialties or certain types of care that they had in the pediatric system.
So when they moved to adult system, they were no longer able to see a psychiatrist or a psychologist. Or a dietitian, especially for those on ketogenic diet. This was a huge challenge. Also speech therapists and occupational therapists. They lost access to certain health care professionals that were available to them in the pediatric system. This is one of the findings.
The other one is that many patients felt that they didn't have an immediate response to their calls or concerns. They thought the help was readily available in the pediatric system: They would call leave a message and someone would call them back. And this was less often the case in the adult system.
I think the other thing that was important was conversations about what to do going forward and in terms of the things that I mentioned, getting prepared. And that was, we saw a division between patients that had normal intellect and patients that had intellectual disability, because the conversations are different for them, right? For patients that have a normal intellect, we're going to be talking about driving, pregnancy, interactions of medications and birth control. And for patients that have intellectual disability, we're going to be talking about power of attorney, schooling, housing, and things like that.
Both groups didn't have much of a conversation about those things, but it was even worse in the group of patients with intellectual disability. Only 12 percent talked about housing or had a discussion with their health care team about things like housing, 16 percent about special education, 24 percent about power of attorney.
When you move to the patients with normal intellect, you see that over half of them had a discussion about driving almost 30 percent had a discussion about pregnancy.
So, the patients with intellectual disability were worse in terms of not having those kinds of preparation for things that they should be aware of when moving to the adult system.
The other thing that was concerning is that one-fourth of the patients were still being seen by their child neurologist. Even though they were adults of the age where they should be seen by an adult neurologist, they were still being followed by child neurologists, and one patient in fact was only seen in the emergency department. That patient didn't have a neurologist or even a family doctor to follow her. So she was just seen in emergency departments from time to time.
So I think it was a very concerning situation overall. I think there's a lot to be done for this population still.
[00:10:58] ILAE: So what are some of the challenges to successful transition care? As you mentioned earlier in our conversation, is it a lack of training, a lack of systems, a lack of time, any or all of those things, or other challenges?
[00:11:17] Dr. Danielle Andrade: I think all of those are important ones. We lack adult neurologists that are familiar with rare epilepsies. So if the patient has a rare epilepsy, especially a genetic epilepsy, it's way more likely that they will stay with their child neurologist. If the patient requires a ketogenic diet, it's very difficult to find adult programs that can offer ketogenic diet to adult patients. It’s also a lack of time in that all this preparation does require time and require funding, because you have to pay the people who are preparing the patients and the families. So, it's a system problem. It's a knowledge problem. It's a widespread unfortunate problem.
[00:12:10] ILAE: And so what are the implications? Obviously, there are widespread implications for the families who don't get this transition care, but maybe if you could talk about a couple of the implications for people who should be moving from pediatric neurologist to adult neurologist and either are transferred without the comprehensive discussions that you've been talking about or they just don't make it there.
[00:12:38] Dr. Danielle Andrade: So if they go to the adult system without a proper transition, some of the things that we see is that they have a lot of difficulty navigating this new system. It's usually a new building, new people, and it takes a while to build trust in the new doctors, the new nurses, and everybody else that is working with them.
Many times they don't know what resources are available to them. One unfortunate thing that we see a lot is that the patient might be transferred from the pediatric neurologist to the adult neurologist, but all the other specialties will not arrange a transfer, not even a transfer. So the patient was seen by a child ophthalmologist because he was on a medication that could affect peripheral vision. They had constant monitoring with this child ophthalmologist. Now they don't have anyone to follow that aspect in the adult system. Or the patient had depression, anxiety, or other issues and were seen by a psychiatrist in the pediatric ward. And now they don't have anyone to follow them for those aspects in the adult ward.
So, the focus might be on the epilepsy, but all the other comorbidities and monitoring necessary to make sure this patient continues to have a good quality of life can be lost if they are not properly transitioned to the adult system.
The risk of patients being followed in the pediatric system is that if they end up having an emergency and go to an emergency room, usually they end up being taken to an adult emergency room, not to a pediatric hospital emergency room anymore. And in the adult system, no one knows that patient and no one knows what disease they have, especially if it's a rare disease. They never heard about that in the adult emergency room, so it can be really challenging to receive proper care if they just land in the adult system before having all that network that should be there to catch them.
[00:14:55] ILAE: Are there models of transition care and other chronic diseases? I'm thinking maybe diabetes or asthma that might serve as models that could sort of speed implementation of transition care programs. Like you don't have to start from scratch with this.
[00:15:14] Dr. Danielle Andrade: Yes. Yes, there are. And some of them have proven to be financially wise. One classic example is for patients who receive kidney transplantation in the pediatric system. They were transferred to the adult system, and the adult nephrologists at the time were not very familiar. And for some reason, they end up losing their transplant. Once a transition clinic was established, pediatric nephrologists would attend the adult nephrology clinics and together they would plan care for these patients. And the rate of transplant loss decreased a lot.
There are similar models in diabetes, in cancer, congenital heart disease. So I think all the specialties are realizing that the patient who is sick with a chronic disease during childhood will not magically become well once they turn 18, and they will need proper care. And the care might be very different from what we are used to delivering in a patient that started having that chronic problem when they were an adult.
[00:16:33] ILAE: So back to your line of research. Are you planning a follow-up survey or any sort of follow-up research to further take a look at what you found?
[00:16:41] Dr. Danielle Andrade: Yes. One of the things we're doing, and this is under the ILAE Transition Task Force, we have asked health care professionals about their perception of the problem, where they think there might be solutions, what is their experience with transition.
So we have already interviewed several child and adult healthcare providers, neurologists, nurses and others. And we are at the point of analyzing this data. And once we have that, combined with the experience from the patients, the next step is to think of ways of facilitating a transition of care, even in places where you don't have the opportunity to offer multidisciplinary clinics, which would be the ideal. But we know the reality is that this is very costly. And so we have to think, what can we do? How can we develop some tool kit that will help patients and families empower themselves while also helping the health care providers in the adult side to do the best that they can possibly do, without the resources that would be the ideal.
[00:18:08] ILAE: Is there anything else about your particular study, your study or transition care in general, or anything that you wanted to mention?
[00:18:17] Dr. Danielle Andrade: We are learning that this is very important. We are learning that patients that don't go through a proper transition have a higher chance of falling through the cracks and their treatment might not be as it was before, and they might have worse symptoms, but we are also learning that we have to change a bit the way that we train neurologists.
For obvious reasons, you have the pediatric neurology training and you have the adult neurology training. There's little continuity between these and certain conditions were considered pediatric diseases. And thanks to the excellent care that these patients are receiving in pediatric care, they are becoming adults and they are coming to us, the adult neurologists, and we have to be aware of how to treat and manage those rare conditions, those conditions that were once thought to be pediatric conditions, because now they are conditions seen in adults. And leaving them with the pediatric specialists might be tricky, because these patients will develop things that you see in adults like high blood pressure, diabetes, osteoporosis, and things that you need to have that adult mindset to make sure that they are receiving the best possible care.
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
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