Navigating epilepsy care from childhood to adulthood

The transition from adolescence to adulthood is tough for most, but adding a chronic condition to the mix can make it seem unmanageable.

Emily Nurre, MD, assistant professor of neurology and rehabilitation medicine at the UC College of Medicine and UC Health neurologist, says this change for pediatric patients with epilepsy can turn life upside down.

“This is a very vulnerable population,” she says. “They are still developing their frontal lobe which can lead to issues with self-management such as adherence to medication and making it to appointments. Many of these patients haven’t been managing their condition because their parents have been doing it for them for years. Then, they’re off to live on their own or attend college and may have not learned the necessary skills to manage their epilepsy.”

The results can lead to missed medications and appointments, worsening of the condition and hospitalization.

This is why Nurre, also a member of the UC Gardner Neuroscience Institute, has made it her goal to create a smoother transition from pediatric to adult care for these patients and to study the best ways to make it successful. The UC Center for Clinical & Translational Science & Training has awarded her a $5,000 Community Partnership Development Grant to help.

Nurre, along with Avani Modi, PhD, and Aimee Smith, PhD, both at Cincinnati Children’s, has also participated in focus groups involving patients and their caregivers who were in the process of transitioning or have transitioned to the adult care world to learn about their struggles and concerns.

“Both groups said that a formalized process and a ‘warm handoff’ would help, so that is our goal,” she says.

In this handoff, Nurre says a social worker from Epilepsy Alliance Ohio will accompany patients to their last visit at Cincinnati Children’s and their first visit at UC Health.

“The Epilepsy Alliance social worker will be available to the patient if they have a question or need resources during transition,” she says. “It’s a friendly face that is available to help patients navigate.”

Nurre and her team have already created a transition clinic that they hold one day a month but they hope to expand.

“Our goal is to create education materials with the input of providers at Cincinnati Children’s to help educate patients before they begin the transition to adult care,” she says. “In fact, we’ve created policies to begin that in the pediatric clinic, and a goal is to include patients in the care process from the start, preparing them for what’s to come. We want to increase independence as early as possible and involve them in activities like calling their doctor to schedule an appointment, filling their own prescription and understanding their illness.”

Nurre says they will eventually track transition readiness and outcomes for these patients as they navigate both systems of care.

“Patients and caregivers often experience fear and anxiety around transition,” she says. “We want to see them succeed and grow. This is such a fun time in their lives, and I love working with this group of patients. We have such an incredible opportunity to help change the trajectory of their life.”

Featured photo of Emily Nurre, MD, outside of the UC Gardner Neuroscience Institute. Credit/Colleen Kelley/UC Creative + Brand