“The UC Epilepsy Center, a comprehensive Level 4 epilepsy center, Cincinnati Children’s Hospital Medical Center and Epilepsy Alliance Ohio are all working together to design and implement a transition clinic for patients with epilepsy from child to adult care,” she says. “These are the patients that often get lost in the health care system, and we want to provide them with the resources needed to be advocates for themselves and live, healthy fruitful lives.”
Nurre has published research on this topic in the journal Clinical Pediatrics.
“In the previous study, we talked to providers who have already tried to develop transition clinics — for conditions such as sickle cell disease, cystic fibrosis and diabetes — to learn from their challenges,” writes Nurre. “These clinics often fail because of billing and funding issues, but we also found there are other barriers. There is often a lack of multidisciplinary care in the adult setting. With pediatric care, patients may see psychologists and social workers in addition to their care providers in one visit. To offer these resources on the adult side, it can be helpful to pool community resources.
“For example, in our clinic we are happy to partner with Epilepsy Alliance Ohio to offer psychosocial support. Also, in the adult health care system, care becomes more specialized, meaning patients see more providers with more appointments and clinics to navigate. It can complicate and confuse things.
“There’s no formal process for transitioning, so patients can feel like they are being kicked out of a care team they’ve known their whole life. It can be upsetting and difficult to figure out which sometimes leads to them discontinuing care,” she adds.