Two Specialized Clinics Extend Epilepsy Care for Adolescents and Young Adults at UPMC Children’s

Laura Kirkpatrick, MD, MS, assistant professor of pediatrics and neurology, Division of Pediatric Neurology at UPMC Children’s Hospital of Pittsburgh, has developed two specialized clinics in the UPMC Children’s Epilepsy Center designed to address specific clinical needs that are unique to adolescents and young adults living with epilepsy.

One of Dr. Kirkpatrick’s clinics focuses on the transition from pediatric to adult care, a time when medication adherence, seizure monitoring, and provider continuity are vulnerable to disruption. The second specialized clinic is a joint reproductive health clinic for female adolescents with epilepsy, developed and conducted in collaboration with the Division of Adolescent and Young Adult Medicine at UPMC Children’s.

Epilepsy Transition Clinic

The transition from pediatric to adult care carries substantial risk for patients with epilepsy. Gaps in care can interrupt medication management, delay seizure reporting, and disrupt continuity with providers. Before Dr. Kirkpatrick created the transition clinic, the time between a patient’s final pediatric neurology appointment and first adult visit exceeded one year. That amount of time is beyond the six-month maximum recommended by Got Transition^®, a federally funded national resource center devoted to improving health care transition from pediatric to adult care. Since the clinic’s creation, the gap at UPMC Children’s has been reduced to approximately 90 days.

Interruptions or lags in care are associated with medication nonadherence, underreporting of seizure activity, and delayed therapeutic adjustments. These disruptions can increase the possibility of breakthrough seizures, emergency department utilization, seizure-related injuries and other health concerns.

“When people fall out of care, they may not be taking their medications, they may not be reporting seizures that would necessitate medication adjustment, and they are at substantially higher risk for serious complications,” Dr. Kirkpatrick says. “The goal of the transition clinic is to make sure that doesn’t happen.”

Transition Clinic Structure and Goals

The clinic operates as a virtual visit conducted while the patient is still under pediatric care. Dr. Kirkpatrick meets patients jointly with colleague Alexus L. Sieger, PA-C, an adult epilepsy specialist, allowing patients and families to meet their future provider before the formal transfer. The transition visit focuses on preparation for independent disease management and adult health care responsibilities.

During clinic, Dr. Kirkpatrick and Ms. Sieger assess and discuss the patient’s development of practical self-management skills and address topics that may not have been discussed before. Counseling includes awareness of mood and mental health, substance use, and safety considerations associated with living independently with a seizure disorder.

Preparation for transition also involves assessing the patient’s developmental readiness for independent care. This includes evaluating whether adolescents understand their diagnosis, can identify their medications and dosing schedules, know how to request refills, and are able to describe seizure patterns and symptoms without relying on caregivers.

“For a lot of patients, this is the first time anyone in a medical setting has checked in with them about how they're doing on developing the core skills of being an adult with a chronic illness,” Dr. Kirkpatrick says.

The Importance of Emotional Readiness

Many adolescents have longstanding relationships with pediatric providers and are reluctant to leave familiar care teams. Parents may also experience anxiety about transferring responsibility to adult systems that operate differently. Conducting joint visits that include both pediatric and adult specialists helps normalize the transition process, reduces uncertainty, and promotes engagement with the adult care team.

“We really want to demystify the process of going into adult care and make it feel more comfortable and safer for patients and families,” Dr. Kirkpatrick says.

When Full Independence Can Be Challenging

A substantial subset of patients will not be able to manage their epilepsy independently in adulthood. About 25% of pediatric patients with epilepsy have moderate to severe cognitive disabilities and will continue to depend, to varying degrees, on their caregivers for support. For these families, the clinic emphasizes legal and long-term planning discussions around guardianship, power of attorney, advanced directives, and preparation for the future when primary caregivers may no longer be available. A social worker embedded in the clinic supports these conversations.

“These families are thinking about things like: mom and dad aren’t going to be around forever — what’s the plan after that?” Dr. Kirkpatrick says. “Those are difficult conversations, but they need to happen before a crisis forces the issue and decisions must be made during a time of stress and uncertainty.”

Broader Transition Efforts at UPMC Children’s

Dr. Kirkpatrick is collaborating with colleagues on a grant proposal to develop a disease-agnostic measure of successful health care transition. The goal is to create a validated tool that assesses whether young adults are effectively managing their condition and navigating adult health care systems. This work is coordinated through a hospital-wide transition task force that meets monthly with representatives from multiple Divisions.

Reproductive Health Clinic for Female Adolescents with Epilepsy

Female adolescents with epilepsy face reproductive health considerations that directly affect their neurological care. Dr. Kirkpatrick co-directs a dedicated joint clinic with Jacquelin Rankin, MD, PhD, assistant professor of pediatrics, Division of Adolescent and Young Adult Medicine. Similar to the transition clinic, visits are conducted virtually with patients.

Referrals to the clinic occur from several clinical scenarios. Patients with catamenial epilepsy, in which seizures cluster around phases of the menstrual cycle, may benefit from evaluation for hormonal therapies. Catamenial epilepsy reflects the influence of hormonal fluctuations on seizure activity. Variations in estrogen and progesterone levels during the menstrual cycle can alter neuronal excitability, leading to predictable clustering of seizures in some patients. Management includes hormonal therapies or adjustments to antiseizure medications, which requires coordination between neurology and adolescent medicine.

The clinic also evaluates patients with complex contraception needs because of the possible interactions between anti-seizure medications and hormonal contraceptives. Another common referral reason involves counseling about the teratogenic potential of certain anti-seizure medications for patients who are sexually active or considering pregnancy.

Medication interactions can further complicate contraceptive planning. Several enzyme-inducing antiseizure medications accelerate hepatic metabolism of hormonal contraceptives, reducing contraceptive efficacy and increasing the risk of unintended pregnancy.

“Patients have not always been told whether their medications carry a risk of birth defects, or how their medications interact with birth control,” Dr. Kirkpatrick says. “Getting that information to patients before it becomes urgent is an important part of their care.”

For patients who become pregnant, active neurological management is required throughout pregnancy and in the postpartum period. Physiologic changes during pregnancy alter drug metabolism necessitating dose adjustments to maintain optimal therapeutic levels. Monthly therapeutic drug monitoring is standard practice in pregnant patients with epilepsy because of the increased risk of breakthrough seizures and associated complications.

“Part of our clinic’s goal is also to educate our patients before pregnancy, whenever that occurs in the future, so they know how pregnancy influences the care they need,” Dr. Kirkpatrick says.

Research to Track Outcomes

Dr. Kirkpatrick is applying for grant support to establish a patient registry for the clinic. The goal of the registry is to track clinical outcomes longitudinally to inform development of evidence-based care models for this population.

“The registry is intended to address a lack of longitudinal outcome data for adolescents and young adults with epilepsy receiving coordinated reproductive care,” Dr. Kirkpatrick says. “Tracking clinical outcomes, medication management, and pregnancy-related variables will support development of evidence-based care models and help create more uniform care standards.”

More Information and Patient Referrals

For more information about the clinics and the UPMC Children’s Hospital of Pittsburgh Epilepsy Center, or to refer a patient for consultation, please call 412-692-5520.