For teens entering adulthood, health care often goes missing

For healthy teens on the cusp of adulthood, a gap of two or three years between leaving pediatric care and getting an adult primary care doctor may not be a big deal. But for kids who have complex chronic conditions, even much shorter gaps in care can be worrying.

The problem of delays in health care “transitions” or “transfers” from pediatric to adult care doesn’t get a lot of play in the press, but it’s been increasingly acknowledged as a problem in recent years.  A 2011 report from the American Academy of Pediatrics found that despite a decade of efforts, “only limited progress” had been made on improving such transitions. Similarly, a 2012 study concluded, “There has been no substantial change in delayed transition during the past decade.” The researchers found that young adults with chronic disease, public health insurance or no health insurance were especially likely to experience gaps in care.

While it might seem obvious that continuity of care is important, particularly for those with serious conditions, that requires both good planning and primary care doctors who are comfortable managing patients with complex conditions dating back to childhood. Both of those are sorely lacking. As a 2008 study bluntly put it, “A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as cystic fibrosis and sickle cell disease.”

A new study published earlier this month in JAMA Pediatrics offers an updated look at the problem. The study, based on records from more than 60,000 young adults enrolled in the Harvard Pilgrim Health Care insurance plan in New England, found that the median gap between pediatric and adult care was nearly 21 months for office visits, and almost 42 months for preventive visits.

“Most youths are transferring care later than recommended and with gaps of more than one year,” the authors write. “While youths with chronic conditions have shorter gaps, they may need even shorter transfer intervals to ensure continuous access to care.”

There’s an important distinction hinted at there: While earlier studies found that teens with chronic conditions were more likely to experience delays in the transition of their care, this study found their transitions were quicker than such teens compared to their healthier peers. But not necessarily quick enough “to address their health care needs,” especially among patients with diseases in which continuous care and monitoring are crucial. Young, chronically ill patients who’ve grown accustomed to intensive services and support may find themselves at sea as they enter the less supportive adult health care universe. 

This latest JAMA study also found that class plays a role: Young adults from lower-income neighborhoods showed longer gaps in their care than their more affluent peers. That’s a concern in itself, but even more so because teens growing up in poor neighborhoods are at greater risk of obesity, STDs and other health problems warranting visits to the doctor.

There were gender differences, too. The study found that on average young women transferred to adult care earlier than men, with corresponding shorter gaps in their care. (That’s consistent with earlier research that has found women in general use health care more than men.)

As a decade’s worth of stalled progress might suggest, this isn’t an easy issue to fix. The Affordable Care Act offers some help when it comes to continuity of insurance coverage; children can now stay on their parents’ plans until age 26. But the breakdown in care as teens become adults is often more about planning, and, for chronically ill youth, the ability to find adult doctors willing and able to take them on as patients. Pediatric providers can do more to ensure their patients find new sources of care, but that will require ongoing education and support for doctors on how to best help their coming-of-age patients stay in the health care fold.

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[Photo by Keshet via Flickr.]