Out of pediatric care, into ledderhose disease images… proto magazine

Maria Ferris is a pediatric nephrologist at UNC Medical Center ledderhose disease images 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 ledderhose disease images 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 ledderhose disease images progressive diseases such as cystic fibrosis. Yet when those patients outgrow their pediatrician’s offices and take on responsibility for their own medical ledderhose disease images care, the roadmap is often unclear. That’s a particular concern because the switch from pediatrician to ledderhose disease images 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 ledderhose disease images or acute care more often; organ transplants are more likely to fail.

One problem may be the developmental stage of patients who ledderhose disease images 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 ledderhose disease images Children’s Hospital. As teenagers start to make their own decisions and control ledderhose disease images their own health, they may also feel pressure to push boundaries and fit ledderhose disease images 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 ledderhose disease images counteract the risks, pediatric specialists say. In practice this can mean teaching skills as basic as ledderhose disease images 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 ledderhose disease images same information.”

Ferris directs a transition program at UNC Health Care called ledderhose disease images STARx, which she started in 2006 after her experience with her ledderhose disease images teenage son. It helps patients who are leaving pediatric care to understand ledderhose disease images 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.

And even if a transition program is in place on ledderhose disease images 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 ledderhose disease images 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 ledderhose disease images a high-risk group. They have to be treated a bit differently.” For instance, physicians might need to explore alternative strategies to help young ledderhose disease images adults who aren’t taking their medication, or they may need to keep an eye out for ledderhose disease images poorer health outcomes as the other priorities of young adulthood ledderhose disease images begin to crowd in.

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 ledderhose disease images 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 ledderhose disease images education to the needs of young adults moving on from ledderhose disease images their pediatricians. “Anything takes time to get implemented,” she says. “But there has been a lot of goodwill to put ledderhose disease images transition programs in place.”