Special clinics at MUSC help adolescents with chronic illnesses shift from pediatric to adult care

by Rachel Stubler

Adolescence is a challenging time full of life-altering changes for budding young adults. For teens with chronic illnesses, this period is even more complex as they must transition from pediatric to adult care. Properly preparing adolescents for this transition is essential for improving patient outcomes.

“At 18, just navigating life in general is difficult,” said Christina Abrams, M.D., a pediatric hematologist at MUSC specializing in sickle cell disease. “And then think about adding another layer of now, on top of navigating life, these patients also have to navigate a complex medical system. Even for those of us inside the medical system, it can be difficult to navigate at times.”

Abrams directs the pediatric sickle cell program and has played a significant role in shaping their transition clinic, which prepares patients for a successful shift from pediatric to adult care.

Transitioning can be challenging for patients and their caregivers due to a loss of familiarity. “Patients and caregivers are usually very bonded to their pediatric subspecialists who have held their hands during difficult times,” said Stephanie Shinn Gaydos, M.D., a pediatric and adult-trained cardiologist at MUSC. “The thought of moving over to adult care can be really scary and overwhelming to the family.”

Sarah H. Mennito, M.D., an internal medicine and pediatric trained physician and program director of the Combined Internal Medicine and Pediatrics residency at MUSC, focuses on transitional care by educating and training residents. She says one of the most important things to recognize about transitions is that ¬there is a too late, but there is never a too early.

“Between the ages of 16 and 22, medical problems tend to worsen as we try to get adolescent patients to take control of their own disease processes,” Mennito explains. “Early preparation is essential.”

Mennito recommends physicians start talk¬ing to their patients about their upcoming provider change when they are around 12 years old. At this age, adolescents can start learning more about their disease and slowly acquire the skills needed to manage their condition independently. The goal is for patients to reach the age they’re expected to transition to adult care, typically between 18 and 25, equipped to ask and answer questions about their health, manage appointments, use MyChart, refill and pick up medications and navigate insurance.

Preparation can vary based on specialty. In Abrams's clinic, pediatric hematologists play a key role in preparing patients. They work alongside a dedicated transition physician, social worker, psychologist and transition coordinator to help prepare patients for adult care.

Abrams emphasizes the importance of continuity. “The pediatricians throw the pitch, but there has to be someone on the receiving end to catch the ball,” she said. “Because if not, the ball just drops to the ground. There has to be a continuum."

Ideally, this continuum is ensured by a “warm” handoff between pediatricians and adult providers. This means that not only are all medical records accessible to the adult provider, but the adult provider also directly communicates with the patient’s pediatrician.

Gaydos is in a unique position. Because she is trained in both pediatric and adult cardiology, her patients with congenital heart defects can continue being her patients even after they’ve transitioned out of pediatric care. She can prepare them for that change without the middleman. She incorporates surveys and transition teaching in her clinic to prepare caregivers and young adults. Results from the survey can then guide topics discussed during their care visit.

Finding time to teach patients the skills to transfer from pediatric care to adult care can be challenging for physicians, requiring longer appointments for which providers must be able to bill. However, it is essential to ensure patient health according to Abrams.

“Sometimes it’s life or death if you can’t navigate this transition to adult care successfully,” says Abrams. If not handled with care, patients can be lost during this period of change, which can lead to higher hospitalization, reintervention and surgical rates.

Pediatric providers often do not have time to ensure each patient successfully transitions to adult care. In the future, both Gaydos and Abrams hope to establish a registry maintained by a dedicated nurse or clinical coordinator to ensure patients are well cared for during this time.

Mennito and Gaydos collaborated to create an elective transitional care rotation for Combined Internal Medicine and Pediatric residents, which allows them to learn how various clinics at MUSC help adolescents with chronic illnesses build health care autonomy. The hope is that as transition care clinics continue to grow and become more accessible for MUSC patients, residents will carry these skills into their own practices.

Over the past 10 years, MUSC has significantly improved the resources available to adolescents with chronic illnesses, thanks largely to the efforts of committed physicians like Abrams, Mennito and Gaydos. By prioritizing early preparation and fostering collaboration between pediatric and adult care providers, these specialized clinics set a standard for how transitional care should be approached. Ultimately, they seek to improve long-term outcomes for this vulnerable population.

In the future, Mennito hopes to expand the approach of these clinics beyond being championed by a few dedicated physicians. The goal is for all adolescents to receive seamless, comprehensive care as they move into adulthood.