New Directions, New Doctors

Changing from Pediatric to Adult Health Care

If you have a son or daughter who’s leaving the nest this fall—whether off to college, a new job or some other adventure—you’re probably facing a big change in your child’s medical care. For those who are still a couple of years away, it’s a good idea to start thinking about how you and your child will make the transition from pediatricRelated to the medical care of infants, children and adolescents. to adult health care—particularly if your child has a chronic diseaseA disease that lasts a very long time. like asthmaA lung disease that causes wheezing, coughing, chest tightness and trouble breathing. or diabetesA disease in which the body has trouble controlling the level of glucose—a type of sugar—in the blood..

“Pediatric and adult health care are very different,” says Dr. Francine R. Kaufman, a pediatrician and NIH-supported researcher affiliated with the University of Southern California. “In pediatric care there’s really an interaction and a focus on the parents as well as the child. In adult care, it’s very common that the parents are excluded from the encounter altogether.”

That means you might not be there to hear things that could be critical to the health of your child. Your child will also have to learn to make appointments, get prescriptions, keep health records together, make insurance co-payments and manage many other details. “You have to prepare for this transition,” Kaufman says.

When to make the change depends on many things. Some insurers and health care systems require patients to move to adult care by a certain age. Kaufman says families should definitely start to get ready to make the transition by the time a child is 18 years old. At that point, patients are protected by privacy laws. That means a health care provider can’t share information with family or friends unless the patient gives explicit permission, which usually means signing a consent form.

Kaufman recommends discussing the timing with your pediatric care provider well in advance. Ask your doctor how long your child should remain in pediatric care before moving to adult care.

“It really should be collaborative,” Kaufman says. “The patient and family have to be proactive. They shouldn’t just wait for their doctor to bring it up.”

Plan with your pediatrician about how to make a transition that your child feels comfortable with. Kaufman says there should be at least a couple of years where the child takes on more responsibility but still has the family’s support.

“Children need to have a couple of years practicing before they can fully participate in their care,” she says. “They can start by being more vocal during their appointments. Have the child come in with a list of questions and concerns. Children should also be given the opportunity to manage their own medications and make their own appointments.”

Once you have a plan to prepare your child for the transition, you’ll need to find a new doctor. Kaufman advises choosing a primary care doctor well in advance who can help coordinate your child’s care. It’s important not to wait until there’s a problem.

“Many kids wait years without care, or they wait until something happens and then they need care really quickly,” she says. “Find someone you can transfer your records to and have an appointment with before something goes wrong.”

Think in advance about what kinds of doctors your child will need. What will insurance allow? Will your child be able to get appointments—and get to the doctor’s office—when there’s a problem?

The more complex your child’s health care needs, the more providers you usually have to plan for. “That’s where a good medical home really comes in,” Kaufman notes. “You need to find a primary care physician who’s helping coordinate care.” Try to meet with the doctors you’re considering, if possible, to make sure your child is comfortable with them.

Some medical centers set up transition appointments for their teenage patients with chronic diseases. The family, pediatrician and adult care workers all get together to discuss the best way to make the transition. “This really matters for chronic care of an underlying disease such as diabetes, which is team-based,” Kaufman explains. “It’s really important in those situations to have someone from both teams.”

If your medical center doesn’t arrange transition appointments, you can try to set one up yourself. Whether or not that’s practical, you need to make sure the old and new offices are communicating with each other. Check that medical records are transferred over, along with any other information that the doctors will need to care for your child.

The process of changing from pediatric to adult health care may seem daunting at first, but with a little planning, it can all go smoothly. “This transition is really about getting the parents much, much more in the background,” Kaufman says. The best way to do that smoothly is to start planning years in advance for a gradual change.

The National Diabetes Education Program has a number of tools to help with the transition process, including a checklist with a suggested timeline for having children take more responsibility for their own care. You can download and print these resources at ndep.nih.gov/transitions/index.aspx. Bring the checklist to your doctor and use it to help discuss and plan the transition to adult health care.