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The transition from pediatric to adult care represents a precarious period for all kids with chronic illness. The process can be particularly challenging for teens with type 1 diabetes, because the condition requires intensive management and self-care. Physicians need strategies to launch teens into independent, self-sufficient care, says Katharine Garvey, MD, MPH, an endocrinologist at Boston Children’s Hospital. She and her colleagues developed a survey to examine barriers to transition to adult care among young adults with diabetes and identify the link between these barriers and prolonged gaps in care. The results were surprising, she says.
The survey of 258 young adults with diabetes, published in October in Endocrine Practice, indicated patients often encounter multiple barriers to transition. Even among this selected population that had established adult care, approximately half of patients reported about the obstacles.
The most common barrier, reported by 47 percent of young adults, was lack of a specific adult provider name. A total of 27 percent of patients indicated they had no contact information for the adult provider. These barriers, which tightly correlated with gaps between pediatric and adult care, are relatively easy to fix, says Garvey.
Competing life priorities also presented a barrier to transition for nearly half of respondents. Once again, pediatric providers can have an impact; teaching patients to focus on self-management prior to transition could help them prioritize their health.
Community-based pediatric providers can address the challenge by beginning to educate patients with chronic illness about transition at a younger age, preferably early adolescence. “It’s very important that they know where they are going, so they don’t fall through the cracks and encounter gaps in disease management,” explains Garvey.
In this survey, 34 percent of young adults reported gaps of six months or longer between pediatric and adult care. The risks associated with delayed or inadequate follow-up for young adults with diabetes include poor glycemic control, emergence of chronic diabetes complications and premature mortality.
Young adults who reported lack of an adult provider name or contact information, competing life priorities or insurance problems were the most likely to face a gap in care of six months or longer.
The American Academy of Pediatrics, the American Academy of Family Physicians and the American College of Physicians in 2002 published a consensus statement emphasizing the importance of transitioning planning for teens with special health care needs. However, progress toward the development of deliberate transition planning process has been slow.
Recent transition guidelines published by the American Diabetes Association and American Academy of Pediatrics are based on expert consensus. The next step, says Garvey, is to leverage observational studies and develop methods to systematically measure transition preparation.
Along these lines, Garvey is a member of a team in the Boston Children’s Hospital’s Center of Excellence for Pediatric Quality Measurement, led by Mark Schuster, MD, PhD, and Jonathan A. Finkelstein, MD, MPH. The team is currently working to develop a measure to assess the quality of transition preparation. Practices could use the measure as a benchmark.
Another integral need is innovative clinical programs that seek to prepare patients for transition. U.S. providers might take some cues from successful transition programs in other countries, such as patient navigators or lay care coordinators. Electronic medical records prompts reminding the physician to introduce transition offer another potential strategy. Garvey and colleagues also suggest development of national and local directories of providers willing to accept patients with diabetes.
“We’ll see exciting things happen in transition preparation in the next few years,” she predicts.
The Division of Endocrinology at Boston Children's Hospital offers a fertile training ground for young physicians and researchers to receive a rich and varied educational experience, drawing on our close relationship with other world-class clinical teachers and researchers in the Harvard Medical School community.
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