Never too early for chronically ill kids to think about transition to adult health care

By Dana Benson

While most patients transition from the pediatric to the adult world of health care about the time they get to vote, chronically ill patients should start thinking about it before entering high school.

That is because the transition to adult care presents extra challenges for this patient group.

Preparation key

But there are a number of steps patients and their families can take to prepare for the transition to adult health care, according to Cynthia Peacock, M.D., assistant professor of medicine and pediatrics at Baylor College of Medicine.

Peacock is also medical director of the Transition Medicine Clinic at the Baylor Clinic, which provides primary care for patients with chronic diseases such as cystic fibrosis, spina bifida, Down syndrome, autism, cancer, congenital heart disease and other illnesses, and helps them make the switch to adult health care.

"I tell them to start thinking about the transition early and to think about it often," Peacock said. "There are so many things to think about and so much to navigate, that it's not too early for a patient even as young as 10 to start planning for the move to adult health care."

Adult care different

Patients should be prepared for the fact that adult care is different, she said. The pediatric environment is very nurturing and after that, some patients find internal medicine physicians and other adult care providers cold and uncaring.

But Peacock urges patients not to take it personally, and says if they can get past the initial shock, patients may even find benefits to adult health care. It can be empowering for them to be actively involved in their care and in the decision-making process, she said.

Patient education

To smooth the transition to adult health care, it's important for patients to educate themselves about their disease and their medical history, instead of letting their parents be in charge of this information, Peacock said.

"Moving out of the pediatric world, patients must be knowledgeable about their disease, and they should be able to concisely state in two pages what all their problems are, what all their medications are, what surgeries they've had and what doctors they've seen."

Patients must also be able to convey the purpose of their visit to the doctor, she said.

Previously, many young patients with a chronic illness did not live beyond childhood. But today, they are not just surviving but thriving, Peacock said. Although they may find the adult care world daunting, patients can successfully navigate it by being advocates for themselves. In short, they must be adults, Peacock said.