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Published On May 30, 2019

CLINICAL CARE

Out of Pediatric Care, Into…?

For young people with chronic illnesses, the transition into adult care can be uncharted—and dangerous—territory.

Maria Ferris is a pediatric nephrologist at UNC Medical Center and specializes in children’s kidney disease. Yet despite her being in the field of children’s health, she felt uninformed about what exactly would happen when her son—who has a chronic illness—needed to transition from child to adult care. “Not one of our doctors could answer that for me,” Ferris says. “They were great doctors, but they hadn’t really had the training to prepare me, or to prepare my child, for what was to come.”

Around 15% of children in the United States have chronic illnesses, which includes manageable, lifelong conditions such as asthma and diabetes as well as progressive diseases such as cystic fibrosis. Yet when those patients outgrow their pediatrician’s offices and take on responsibility for their own medical care, the roadmap is often unclear. That’s a particular concern because the switch from pediatrician to adult provider has been shown to coincide with poorer outcomes. Blood sugar levels go up for teens with diabetes; teens with sickle cell disease end up in the hospital or acute care more often; organ transplants are more likely to fail.

One problem may be the developmental stage of patients who transfer to adult care, which typically happens around age 18 to 21, says Bethany Foster, a researcher studying pediatric chronic kidney failure at the Montreal Children's Hospital. As teenagers start to make their own decisions and control their own health, they may also feel pressure to push boundaries and fit in with their peers. This can lead to unhealthier behavior. “As people grow up, they naturally get less adult supervision, and that is appropriate,” Foster says. “But when you have a chronic illness, the stakes are high.”

A health care strategy for these patients should work to counteract the risks, pediatric specialists say. In practice this can mean teaching skills as basic as keeping track of a medication schedule. “So many young adult patients don’t even know what medicines they’re taking,” says Amy Sobota, a pediatric hematologist at Boston Medical Center. “When they were babies, we taught their parents what they needed, but then we neglect to help the teenagers with the same information.”

Ferris directs a transition program at UNC Health Care called STARx, which she started in 2006 after her experience with her teenage son. It helps patients who are leaving pediatric care to understand their conditions and develop the skills they’ll need to take better care of themselves. While the specific challenges vary widely—cystic fibrosis is quite different from diabetes—many of the skills they need are the same. “They need to know how to make their own appointments, how to communicate with their doctors, how to call for refills, how to take their medications—which are all things we teach in the program,” Ferris says.

The Children’s Hospital of Philadelphia and other hospitals have also established formal transition programs. “But they’re not as common as they should be,” Ferris says. It’s challenging to find the funding to get such programs started, she notes, and harder still to maintain them.

And even if a transition program is in place on the pediatric side, the process requires buy-in from both sides of the transfer—and often, Foster says, the adult doctors taking over the care from pediatricians aren’t involved in the conversations about transition and don’t have a good understanding of the challenges associated with the process.

“A lot of the time on the adult side, we hear, ‘these kids are irresponsible, they don't know anything about their conditions, it’s not our fault if they do badly,” says Bethany Foster in Montreal. “They may not recognize that these young patients are in a high-risk group. They have to be treated a bit differently.” For instance, physicians might need to explore alternative strategies to help young adults who aren’t taking their medication, or they may need to keep an eye out for poorer health outcomes as the other priorities of young adulthood begin to crowd in.

“In pediatrics, we don't treat a three-year-old the same as 13-year-old,” says Amy Sobota. “Yet in adult medicine, everyone is lumped together. We think the developmental stage of these young adult patients should be top of mind for the doctors who take over their care.”

According to data collected in 2016, more than four out of five kids ages, 12 through 17, with special medical needs weren’t adequately prepared for their transition to adult care, and the American Academy of Family Physicians and U.S. Department of Health and Human Services, among other groups, have recently called for better training for physicians on both sides of the transition.

Despite the challenges, Foster says she believes progress is being made, with physicians increasingly recognizing the need to tailor care and education to the needs of young adults moving on from their pediatricians. “Anything takes time to get implemented,” she says. “But there has been a lot of goodwill to put transition programs in place.”

Ferris says that kids with chronic illnesses have a right to transition care: “It needs to happen. It’s not a luxury. It’s a matter of patient safety and survival.”