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The director of the Adult Genetic Epilepsy Program at the University of Toronto talked about the critical issues experienced by patients who transition from pediatric to adult care in epilepsy. [WATCH TIME: 9 minutes]
WATCH TIME: 9 minutes
"In the pediatric system, they have access to a nurse, psychologist, child psychiatrist, speech pathologist, and social worker. When they move to the adult [care] system, many times they go to see [only] the adult neurologist, losing access to [other] crucial healthcare providers."
In epilepsy, a complex neurological condition, seizures are often one part of the disease that patients experience. Previous research and real-world data have shown that the shift from pediatric to adult healthcare systems may be a challenge for many young patients with epilepsy and their families. These difficulties may intensify when epilepsies are associated with other comorbid disorders. Published in Epilepsy & Behavior, a survey study aimed to understand the perception of patients with epilepsy and their families who were preparing to move from pediatric to adult healthcare system or had already moved.1
In the survey, major components included demographics, epilepsy details, quality and access to care received in pediatric and adult years, and questions regarding transition and readiness. At the conclusion of the analysis, findings showed that most patients lacked access to significant social and medical support after shifting to the adult healthcare system. Conducted by senior author Danielle Andrade, MD, MSc, FRCPC, and colleagues, these results suggest there is a lack of appropriate transition to adult healthcare system for patients with epilepsy in the community and academic centers in Canada and United States.1
Andrade, professor of medicine, director of the Adult Genetic Epilepsy Program and medical director of the Epilepsy Program at the University of Toronto, recently sat down with NeurologyLive® in an interview to discuss how the medical community can better support younger patients with epilepsy in their teens during the transition period from pediatric to adult care. She also shared some examples of specific difficulties that patients may face when essential healthcare services are lost during the transfer. Additionally, Andrade spoke about the ways neurologists who see adult patients can enhance their understanding of the broader health issues faced by young adult patients with epilepsy beyond seizures.
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