NeuroVoices: Danielle Andrade, MD, MSc, FRCPC, on Challenges in the Transition from Pediatric to Adult Epilepsy Care

Danielle Andrade, MD, MSc, FRCPC

Credit: Dravet Syndrome Foundation

Epilepsy, a complex neurological disorder, encompasses seizures as one of the many aspects of the condition experienced by patients. Research suggests the transition from pediatric to adult healthcare systems can pose significant challenges for young patients with epilepsy and their families, particularly when additional comorbidities are present. A recent survey study published in Epilepsy & Behavior explored the perspectives of patients with epilepsy and their caregivers either in the process of transitioning or having already transitioned from pediatric to adult care settings.¹

The survey involved various factors such as demographics, epilepsy specifics, quality of care received during pediatric and adult years, and inquiries concerning transition readiness. In the responses, most patients faced a dearth of substantial social and medical support upon transitioning to the adult healthcare system. These findings, conducted by senior author Danielle Andrade, MD, MSc, FRCPC, and colleagues, highlighted the inadequacies in facilitating a seamless transition to adult healthcare for patients with epilepsy across community and academic settings in Canada and the United States.

In a new iteration of NeuroVoices, Andrade, professor of medicine, director of the Adult Genetic Epilepsy Program and medical director of the Epilepsy Program at the University of Toronto, discussed why transitioning epilepsy care from pediatric to adult settings is particularly challenging for patients. She also talked about the repercussions of losing access to multidisciplinary healthcare teams during this transition. In addition, she spoke about how patients and families can be empowered to navigate the transition more effectively.

NeurologyLive: What do we know about the transition of care from pediatric to adult healthcare systems in epilepsy?

Both [this] publication and a [virtual] forum promoted by the [International League Against Epilepsy] were about the transition from pediatric to adult care for patients with epilepsy. This is an extremely important topic in the sense that epilepsies have 2 peaks, one early in life and the other later in life. Most of the patients will develop epilepsy in the first 2 decades of life and about 50% of patients that develop epilepsy during childhood will continue to have seizures into adulthood. [Patients] usually leave the pediatric system and go to the adult system at a time that is difficult for any teenager, let alone a teenager with epilepsy, especially with all the comorbidities that come with epilepsy. Epilepsy is not just seizures. Patients with epilepsy often have anxiety, depression, etc. Many epilepsies are even caused by single gene disorders that are associated with autism, learning disabilities, or intellectual disabilities that have more severe forms. Sometimes these epilepsies cause more of a problem for patients. Patients with epilepsy in general are complex. The degree of complexity varies. They have to go to a new system and see a new physician. They experience new places and new faces at a time of their lives where everything else is already chaotic in their teenage years, which is has its own difficulty with leaving childhood and moving to become adults. They need more attention than what the systems usually provide.

What were the main takeaways you gathered regarding the patients and caregivers in your research?

Many caregivers and patients felt unsupported during this period of transfer. Transition is the term that we reserved for when the process is well done, when the patients are prepared to move from the pediatric to the adult system and their followed along. When this doesn't happen, the patients are just transferred from pediatric to adult care. In the patients we interviewed, we observed that a large majority of them felt completely unsupported during this transfer. They had many difficulties such as they often didn't even know who the new physician would be, the new adult neurologist for them. They barely had the name of the physician and the name or address of the new location where the [physician] would see the patients.

The other problem is that [participants] felt that many services that they had access to before in pediatric care were lost when they moved to adult care. This is very important and has been observed in other places as well. In the pediatric system, they have access to a nurse, psychologist, child psychiatrist, speech pathologist, social worker, etc. When they move to the adult system, many times they go to see just the adult neurologist, and they don't have access to the other health care providers that they had before. This can definitely impact their care in terms of seizure frequency and their well being. We don't know but we suspect it can develop the overall social outcome of these patients.

There is some old research saying that patients with pediatric onset epilepsy fared much worse as adults than patients with pediatric onset rheumatoid arthritis or even diabetes. It's possible that if you lose a lot of your healthcare team, you don't have enough structure to go ahead and develop as well as you could, socially, financially as you would if you had that structure from a health point of view.

In the research we recently published, we had a patient that had epilepsy taking 2 antiseizure medications and once she left the pediatric system, she didn't have any adult neurologists to follow her. She was being seen in emergency room departments only. That was all the epilepsy care she was receiving, which is completely inappropriate and unfortunately, is something we see sometimes.

What are the necessary steps following this study? What do you think should be the right action to take from here, especially for clinicians?

There are several things. One of them is to help the clinicians, the adult neurologist, better understand the problems that teenagers with epilepsy have other than seizures. We have to broaden our view and understand that they have many other conditions that need also proper care. Ideally, this care and the transfer of care should have been put in place already in the pediatric system before they left. This is what in the [virtual] form, one of our colleagues, was showing. She has a wonderful transition program where all that is in place before the patients leave the pediatric system. So, when they move to the adult system it is much better. Thus, one piece is having the adult neurologist better understand what the needs are of young adults with epilepsy.

The other piece that adult neurologists need to do is to better understand the genetics of epilepsy as well. Now we know many of the epilepsies have a genetic background or an important genetic influence. Pediatric neurologists are more comfortable treating genetic epilepsies than adult neurologists. This is something we also did research some time ago, when it was very clear, adult neurologists are not as comfortable seeing the patients, prescribing medications or even making the genetic diagnosis or ordering genetic tests. All that needs to be done for this is some education for the adult neurologist.

The other part that we have to work on is perhaps empowering patients and families so they can help themselves when they have to move from the pediatric to the adult system. Like I said, my colleague in France has a wonderful system and her patients are very lucky. But this is not the reality in most places. A transition program is costly. It's complex, and most places don't have that. What can we do to teach the patient and the families how to fight for themselves? What are the things they need to know? How can they ask for help? So, that they have a better a smoother process going from pediatric to adult neurologist. Then there's the system. Our system is already recognizing the need for a better transition of care. I think once the whole medical system is better established, we will hopefully have the financial assistance that is needed in order to put in place better transition programs.

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

REFERENCES
1. Zulfiqar Ali Q, Marques P, Patel P, Carrizosa J, Nabbout R, Andrade DM. Transition in epilepsy - A pilot study with patients in and outside of academic centers. Epilepsy Behav. 2024;151:109624. doi:10.1016/j.yebeh.2024.109624