Newswise — Carmen Torres started seeing a general neurologist after she was diagnosed with epilepsy at the age of 12. At first, her mother engaged with the doctor and asked questions about Carmen’s health. A few years later, however, the appointments had taken on an odd consistency.
“I would be in the room, and [the neurologist] would look at me, and he would acknowledge me,” said Torres, now 22. “But as for treating me as an adult…it was mainly my mom [he spoke to].”
A study by Hansen et al. revealed that many adolescents with epilepsy have experiences like Torres’ during their final years under pediatric care. They feel excluded from their own appointments as their physicians focus more on their parents for questions and explanations and use medical language they cannot understand.
“[Pediatricians are] always going to see you as a little kid until you are not, especially when you are showing up with your parents,” said Torres.
Because her neurologist sees both children and adults, Torres had time to become more involved in managing her epilepsy. Today, she asks more questions than her mother does during appointments and takes her medication without any reminders.
For adolescents who are seen by pediatric providers outside of a comprehensive epilepsy center, the change to adult epilepsy care can be overwhelming, from an organizational as well as a personal standpoint. After years of being passive observers, adolescents are expected to take responsibility for many aspects of their own health care. Many must leave health care providers they know and trust, forced to start over in a new office or hospital.
A 2024 study found that young adults feel unprepared for these changes. None of the 17-year-olds surveyed for the study had discussed transition of care with their pediatric providers, and only one could name their new adult neurologist.
Transition: More than just a transfer
A transfer of care is brief: it’s a move from one care provider to another. Transition care is much more than transferring medical records; it involves years of conversations and planning.
“[Transition of care] is a planned process on…how to be more independent,” said Jaime Carrizosa, a pediatric neurologist at the University of Antioquia in Medellín, Colombia and a member of the ILAE Transition Task Force. “It’s how to be an active actor in decisions during medical appointments and in daily life.”
Without a proper transition, a young adult can be overwhelmed by differences in the adult health care system.
“Epilepsy often comes with a complexity of care that has comorbidities,” said Rianne Goselink, an adult neurologist at the University of Gothenburg in Sweden. “Often in pediatric care, it is very nicely organized. It is one team who takes care of all of the complaints or all of the symptoms, and when you transfer to adult care, it is often much more splintered. Then you have to visit this doctor for this, and this doctor for this…and they have very clear boundaries.”
For adolescents without intellectual disability, the main goal of transition of care is fostering independence. This places the young adult into a more active role in appointments, while parents and caregivers begin to step back.
“It is a maturing process…for the adolescent and the [parent],” said Carrizosa. “It is challenging, but it is also fruitful to see the person getting more conscious of themselves and their disease.”
For these adolescents, a successful transition plan covers various topics that will help the adolescent navigate the epilepsy care system, such as understanding the exact diagnosis and how to communicate with health care professionals. Other topics address quality of life issues, medication interactions, pregnancy, and education and career plans.
For teens with intellectual disabilities, transition of care focuses more on the parents or caregivers with topics including special education, housing options, and the need for a power of attorney.
“A lot of care hangs on the primary caregivers: their parents,” said Goselink. “They need to make the switch…to find the best possible way of life for the young person, even if the parents are not there anymore or have their own reasons why they cannot provide care anymore.”
With so much to cover, the Child Neurology Foundation recommends that pediatric neurologists begin transitional care when a child is 12 years old and continue annually with scheduled visits until adulthood. Conversations relating to transition can decrease the risk of seizures, seizure-related injuries and other health complications.
Yet most adolescents with epilepsy do not begin transitional care until 16. The 2024 study found that only 28% of those under 18 had any discussion with a provider about transitioning into adult care. And Hansen’s study found that physicians avoided the topic of transition of care unless prompted by the family.
Challenges preventing improvement
A lack of provider training is one challenge to improving transitional care in epilepsy. A 2020 study found that limited education on transition was the main barrier preventing the planning and maintenance of these programs in Latin America. In the same year, researchers in the United States found that 60% of neurology and pediatric residents had limited experience with transition programs, and most of them felt uncomfortable developing one on their own.
“You learn pediatrics…and later on you study internal medicine,” said Carrizosa. “That is the curriculum for all general practitioners… and there is no place for this gap between one age and the other.”
Research and clinical advances over the decades have also caused more children with chronic conditions, such as epilepsy, to survive into adulthood. This means that epilepsies once seen in pediatric offices only are now being seen by adult neurologists.
Even with a successful transition of care, adolescents face more autonomy in adult epilepsy care: taking and refilling medications, scheduling appointments, and communicating with their neurologist. Although Danielle Andrade, the director of the Adult Genetic Epilepsy Program at the Toronto Western Hospital in Canada and co-chair of the ILAE Transition Task Force, says that the switch to adult care may encourage young adults to become more vocal about symptoms, it also places expectations of responsibility.
“[The young adult] brain is not mature yet,” said Andrade, the senior author of the 2024 study. “So they may run into problems like forgetting to take their medication or sometimes not even being aware that they should call to report a side effect.”
A 2022 study from Korea found that 45% of surveyed patients and caregivers did not want to transition to adult care, most often because they had an emotional bond with their pediatric care provider. Andrade’s 2024 study found that 35% of young adults were followed by their family physician after leaving pediatric care, while another 27% were followed by their pediatric neurologist, even though they were now adults.
Although staying with a familiar provider may feel safer for young adults with epilepsy, it also may affect their care. Adult neurologists have specialized knowledge about certain aspects of adult epilepsy health, such as how certain antiseizure medications affect pregnancy, bone health, or lipid levels. Circumventing the transition to an adult neurologist also places young adults at a disadvantage if they need emergency care.
“If they end up having an emergency and go to an emergency room, usually they end up in an adult emergency room,” said Andrade. “And [if they are still seeing a pediatric provider], then in the adult system, no one knows that patient and no one knows what disease they have, especially if it's a rare disease. So it can be really challenging to receive proper care.”
Closing the gap
The ILAE Transition Task Force is conducting a study to determine the perceptions and experiences of transition, along with potential solutions. The task force will then use these data to create general guidelines for transitional care that all epilepsy clinics can use, even if they are not multidisciplinary.
“We know the reality is that [transition of care] is very costly,” said Andrade. “And so we have to think: What can we do? How can we develop a toolkit 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 ideal resources?”
Until guidelines are generated, pediatric neurologists can improve the transition experience by starting transition of care early. Taking the time when it is available to provide information about topics related to adult care and quality of life can help adolescents feel more prepared, said Goselink.
“There is very low-hanging fruit for all of the clinics around the world,” she said. “With small improvements, [one] can make the [transition] experience much better.”
Once the transition is complete, Andrade recommends that adult neurologists be patient with incoming young adults, who may still be adjusting to taking responsibility for their own health. Neurologists can also promote open lines of communication by encouraging their new young adult patients to talk to them about any medication side effects, as well as anxiety or other comorbidities.
Torres says that even the smallest form of communication can make a big difference.
“The doctor cannot do everything,” said Torres. “They are not like superheroes, but they could try to give their best with information. Even if it is a pamphlet with the name of the medication and encouraging the [young adult] to look it up is an immense help, because it is also preparing the pediatric patient for adulthood and how to do these things by themselves.”
Resources:
Transition from pediatric to adult epilepsy services (National Institute of Health and Care Excellence)
Transition of care toolkit: English (Child Neurology Foundation)
Guía para transición de cuidado: Español (Child Neurology Foundation)
Family experiences with transition of 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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