Transitioning to adult diabetes care from pediatrics for Type 1 patients

Dr. Fran Cogen Health Pro
  • By their very nature, pediatricians and pediatric sub-specialists enjoy caring for children of all ages. At Children's National Medical Center, we care for children up until 22 years of age. Thus, our patients tend to "age out" after completing college or entering the workplace despite their wishes to remain with our Diabetes team indefinitely. I have written in the past about the different developmental transitions that occur in children, teens, and young adults. Perhaps the biggest hurdle to overcome is transferring diabetes care from pediatrics to the world of adult internal medicine. Most families wish to delay this process as long as possible due to the inevitable turmoil that results when changes occur: good or bad. Indeed, upon scanning the many blogs and comments posted on this site, I have become painfully aware of the lack of uniformly well-trained physicians that inherit our pediatric patients. As such, many of the comments relate to self-empowerment, a topic with which I will address further in a future blog.

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    Letting go-for both the pediatric diabetes care team and child/family members is a very traumatic and difficult process. Indeed, those lucky enough to receive their diabetes care at Diabetes Centers that care for both children and adults are very fortunate. My usual practice is to see young adults until they graduate from college or begin working and then refer to a local trusted adult endocrinologist. There are often emotional farewells: including tears from the young adult, caregiver, and myself. Despite the referral to the adult endocrinologist, many of my patients do not go to their appointments and are "lost to follow-up." Several of my colleagues have written scholarly articles documenting the lack of continuity of diabetes care after a young adult leaves a pediatric practice. Thus, after young adults leave their diabetes team, there tends to be a lapse of care until they become older. Many "twenty-somethings" forgo care due to denial, lack of insurance, and finally, a strong inertia to find a new diabetes care team. Unfortunately, due to the lack of the continuity of proper diabetes care, many of our young adults "fall through the cracks" and place themselves at risk for acute and future diabetes-related complications. There is currently a movement to develop a program that transitions the young adult from the pediatric diabetes team to the adult endocrinologist. Essentially, the ideal scenario would be to hold a joint clinic with both pediatric and adult diabetes team members working together, which may be difficult in terms of implementation.


    Another barrier to the transition is that the young adult must assume responsibility for all diabetes self-care skills. In the pediatric diabetes team scenario, much of the diabetes self-care skills are shared between the child/teen/young adult and the adult caregiver. In addition, if the child was diagnosed as an infant or young child, much of the initial diabetes "survival" skills were taught to the caregiver and often no formal educational sessions were given to the much older child at a later date. Thus, it is often difficult for the young adult to assume on his own the myriad tasks necessary for responsible diabetes management. At Children's National, we are looking into beginning classes specifically to educate these older children as they transition to the teenage years. These educational sessions would help empower the young adult to take on the responsibilities necessary to live independently outside the parental home, as well as provide them with the information that will be required when they are cared for the adult diabetes team.


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    There is a great difference between the pediatric and adult diabetes team. There is less "hand-holding" (pediatric health care providers just can't help themselves) and less cajoling of our kids with diabetes to take care of themselves using clever reinforcement techniques. Therefore, they have to be able to know how to interact responsibly with the adult endocrinologist. They (not caregiver) need to be able to know their insulin regime and dosage, blood glucose readings, concerns, and if prescriptions need to be refilled. Essentially, they need to grow up! Our job as pediatric diabetes care providers is to help them get ready to safely jump into the world of adulthood.


    Next: Part 2: How to find the right adult endocrinologist and what you need to know before you make a decision.


Published On: November 17, 2009