When does a pediatric patient with diabetes transition to the adult diabetes care team? That is a question usually answered by the pediatrician together with patients and families. But now, the Naomi Berrie Diabetes Center, has implemented a new, formal, standardized “Adolescent/Young Adult Transition Program”—in part to make sure that no child is left behind without the knowledge and skills required to help ensure successful diabetes care into adulthood.
The program came about because, “there was some general discussion amongst both the pediatric and adult teams that there were some patients who were at risk for getting lost in transitioning from their pediatric to adult clinicians,” said adult endocrinologist, Jacqueline Lonier, MD, who is on the “transition team” along with a pediatric endocrinologist, an adult and pediatric diabetes educator and a social worker. “It’s a tumultuous time in their lives,” Dr. Lonier added, “They are moving away from their parents for the first time, they are going to college, and often their diabetes care kind of gets pushed low on their list of priorities. So we wanted to make sure that these patients weren’t getting lost, and they had a solid, reasonable plan for their diabetes moving forward.”
Patients receive a letter welcoming them into the transition program when they turn 16. “If we start the patient at 16,” said Courtney Melrose, the adult diabetes educator on the transition team, “by the time the patient is 18, 19 or 20—and hopefully by the age of 24, the cut off age for the program—they are ready to transition.”
The Transition Program consists of several small steps. First, the pediatricians review the transition process with their patients and their families, and also review the patient’s understanding of his or her diabetes. Then, added Courtney, the diabetes educators “take it to the next level” by determining what skills and knowledge each patient has and what they need to learn to function as an adult with diabetes.
“For pump patients, we make sure that they know their pump settings or know what to do if their pump fails. If patients get sick, we make sure they know how to check ketones—or do they even know what ketones are,” she said. “Then there’s all of this information that maybe parents have learned along the way, but not the children—like where they can get their insulin refilled. These children may have had their diabetes very well managed by their parents, and this program will teach them that they can learn to do things themselves.”
According to Dr. Lonier, the transition process can be as difficult for parents as it is for children. “We expect a little bit more independence from our patients, and less parental involvement can be a source of stress especially since these parents have been intimately involved in the healthcare of their kids for so long. Just making them more aware that the process is starting makes for a smoother transition of parents as well.”