A Graduation That May Carry Unnecessary Risk

Right before I moved from Boston to New York City, I went to see one of my patients graduate from high school. I was in an elegiac mood — leaving the city, saying goodbye to friends — and I teared up as I watched her from the balcony. It felt right that her time as my pediatric patient was ending not with my moving away, but with her marching proudly into the future. 

In adult medicine, patients don’t graduate. You don’t provide adult primary care with an eye toward the day that your patients outgrow you and pass triumphantly on to the next doctor. Pediatrics, on the other hand, is about growth and change. The goal is to help a healthy child grow into a healthy adolescent — and then the pediatrician says goodbye, and the patient moves on.

But we have a lot to learn about helping families make that transition. Studies show that the zone at the end of the pediatric period is fraught with uncertainties and risks, especially for children with chronic illnesses and disabilities. We often fumble the handoff to adult primary care, and the consequences can be serious.

Dr. Debra Lotstein, assistant professor of pediatrics at the University of California, Los Angeles, studies this transition in adolescents and young adults with chronic medical conditions — problems which can range from asthma and diabetes to developmental conditions like autism to complex and rare syndromes. As they move out of the pediatrician’s office, Dr. Lotstein and her colleagues have found, transition planning is often limited, and gaps in care occur for as many as two-thirds of these young adults.

“A large number of them either have no care as adults or just very minimal care that really is much more haphazard and not nearly as comprehensive as the care they had when they were children,” she said.

Even young adults without major medical problems often go without regular health care after leaving their pediatricians. One cause is poor access to insurance, as young adults age out of their childhood coverage, public or private. The transition years are a high-risk period in this regard. A report released in May by the Commonwealth Fund found that in 2009, a third of the 19- to 29-year-olds in this country had no coverage, though it predicted improvement with the Affordable Care Act, the health care law enacted in March 2010.

There are few distinct medical dividing lines between pediatric care and adult medicine. Pregnancy has been one traditional marker; get pregnant and you move on to the women’s clinic (other reproductive health needs are often met by pediatricians, including adolescent medicine specialists).

Indeed, in recent years pediatricians have had to do some catch-up learning about a number of conditions that we used to think of as belonging more to adult medicine — hyperlipidemia and Type 2 diabetes, for instance, or high blood pressure. This is in part a result of the growing population of obese teenagers, along with a fuller awareness of the importance of finding and treating early stages of adult chronic diseases.

Conversely, adult specialists have increasingly needed to learn how to handle adults with a range of problems once limited to pediatric practices.

When I was doing my residency during the 1980s, we took care of adolescents with cystic fibrosis, knowing that many were unlikely to live past their 20s — it was a pediatric disease, and the experts were pediatricians. Not that long ago, there were relatively few grown-up survivors of complex congenital heart disease, for example, or childhood cancer, or congenital H.I.V. infection.

But life expectancy for all these patients has lengthened significantly, necessitating a deliberate effort to create adult centers with adult expertise in these diseases — places to catch young patients as they exit pediatric care. And cystic fibrosis is often cited as a particular success story, with those adult centers functioning well for the patients who now live for many decades past leaving pediatric care.

Dr. Mary R. Ciccarelli, associate professor of clinical medicine and pediatrics at Indiana University School of Medicine, directs a program called the Center for Youth and Adults with Conditions of Childhood. “In the past, what we’ve done is feel successful because youth have survived to 18,” she said of children with these complex medical problems. These days, success should mean that an 18-year-old with such a condition is not only surviving, but also learning the skills to manage all the different health care pieces going forward — “a much taller order.”

Dr. Renata Arrington Sanders, assistant professor of pediatrics and adolescent medicine at Johns Hopkins University, has developed tools for pediatric providers to assess certain checkpoints of maturity that young patients need to function as adults in the health care system — knowing your medical history, knowing how to obtain and transfer your records, knowing how to get and refill prescriptions, how to contact an insurance company.

The goal is to get doctors, and parents, thinking along these lines early in a child’s adolescence. “People think, ‘I don’t need to do this till 18,’ ” she said. “Eighteen is probably too late.”

There is no established ritual for leaving your childhood doctor, whatever I may have imagined as my patient marched across her high school stage. But helping a family make that transition successfully may be one of the most important services a pediatrician can provide. As the valedictorian’s cliché goes, commencement is supposed to represent a beginning, not an ending.