ATLANTA — Children with type 1 diabetes tend to get excellent, dedicated care from diabetologists who specialize in working with children and adolescents with juvenile diabetes.
But when it comes time to “graduate” to adult care, these kids may find themselves with no one to care for them, Dr. Leslie Plotnick said at the annual meeting of the American Academy of Pediatrics.
“I worry that we do not have enough endocrinologists to carry on with these kids when they leave our centers. Even though you are 18, it doesn't mean that you are an adult, and these kids can sometimes fall through the cracks through no fault of their own,” said Dr. Plotnick, a professor of pediatrics at Johns Hopkins Medical Institutions, Baltimore.
The transitioning of children with juvenile diabetes from the pediatric setting to adult endocrinologists is problematic for many reasons, Dr. Plotnick and Loretta Clark, R.N., a certified diabetes educator who works with Dr. Plotnick, said in a later interview.
One big obstacle to continuing on to good care is insurance. Unless a child is attending college full time, they may be dropped from their parents' insurance. Even a full-time job is no guarantee of health insurance.
“It's a big problem. If you work for a big company, or for a large institution, preexisting conditions may not eliminate you from health insurance. But if you are working in a small business, preexisting [medical conditions] can mean that you are not eligible to get health insurance, even if it might otherwise be offered,” Dr. Plotnick and Ms. Clark said.
This is true for all older children who have chronic medical conditions, Dr. Plotnick added. “Kids who have developmental delay may continue on their parents' insurance for a longer time, but this is not true for medical conditions. This problem goes way beyond diabetes and includes all pediatric chronic diseases.”
Children becoming young adults who see an adult endocrinologist may encounter other difficulties, because adult practice tends to differ considerably from the team approach to type 1 diabetes to which they have become accustomed.
“Here at Hopkins the kids usually see a nutritionist, a diabetes educator, and a physician. That isn't always true when [as young adults] they go to see an adult endocrinologist. And if they don't feel like there is a good match with the adult endocrinologist, they sometimes don't go back. And then they don't follow up. Sometimes a parent will call me and say their child went to see a particular doctor, didn't feel comfortable with that doctor, and hasn't been to see him again,” said Ms. Clark.
It would be ideal if there were enough pediatric endocrinologists to continue to see children well into their young adulthood.
“When kids finish high school, there are many changes in their lives. Having to change to a different physician as well is very tough,” added Ms. Clark.
Over the past year, Dr. Plotnick and her colleagues have started a program with an adult endocrinologist who has agreed to see their type 1 “grads.” So far, the program has been a success, she said.