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Helping kids with chronic medical conditions make the jump to adult care

With just one dramatic example from her practice, Stanford pediatric critical care specialist Yana Vaks, MD, recently illustrated for me the importance of better adult health care for children who survive a catastrophic childhood illness or endure an incurable medical diagnosis.

“There was an 18-year-old who came to the hospital in crisis,” she said. “He had a liver transplant when he was 8, but when he turned 18 he wanted to start a new life and decided he was done with all that extra health consciousness his transplant meant.” The patient had stopped taking the drugs necessary to keep his body from rejecting the transplant and neglected to see his doctor regularly. By the time Vaks saw him, his transplanted liver had begun to fail, starting a catastrophic process that affects all body systems. “It was a shocking case,” she said. The teenager died the next day.

His mother told Vaks that the biggest challenge had been the 18th birthday, that legal coming of age where parents can no longer control what medications their children take.

As I did the reporting for a Stanford Medicine story called "When I Grow Up," I was shocked to learn just how many young adults fall into the categories of survivor or chronically ill: They may soon represent 10 percent of the U.S. population ages 15 to 25. Before advances in treatment began saving so many lives, that population was just 1 percent.

The specialists who treat these growing children have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.

What’s needed is something called transition care — but no one had studied just what that should look like. The Clinical Excellence Research Center, established in 2010 to study, design and demonstrate ways to improve health care while reducing costs, identified transition care as a good candidate for the changes it hopes to effect with its work. For two years, CERC gathered information, reviewed research, interviewed patients and families and visited hospitals around the country, and it has launched pilot programs - including one at Stanford Children's Health - to test its recommendations:

The CERC team’s recommendations emphasize that pediatricians and pediatric specialty teams must be guides in this process: equipping patients and parents with information so they can anticipate the transition, coaching patients to develop the confidence and skills needed to manage their health, and locating and being available to specialists and primary care physicians who will need certain medical knowledge to care for their patients as adults.

Previously: Stanford Medicine magazine tells why a healthy childhood mattersStudy highlights childhood cancer survivors' increased risk of future health problemsQuestioning whether physicians are equipped to care for childhood cancer survivors and Chronic illness in childhood: One patient's story
Illustration by Daniel Horowitz

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