According to new research, more and more children in the US are getting type 1 diabetes. From 2002 to 2009, the number of kids with type 1 diabetes rose from 24 per 100,000 to 27 per 100,000. Here’s a news flash: kids grow up. More children with T1D will eventually mean more young adults transferring diabetes care from a pediatric setting to an adult setting.
The change from pediatric endocrinologist to adult endocrinologist (or general medical provider) is inevitable — and it can also be rough. Studies have shown that diabetes health outcomes suffer when young adults move from pediatric to adult care. A group of researchers set out to find out whether some kind of structured program could ease the transition. They announced their findings at this summer’s 77th ADA Scientific Sessions conference, and the findings look promising.
What is a Structured Transition Program and do T1D youth need it?
Diabetes requires constant care. When a child has diabetes, the responsibility falls upon parents’ shoulders; gradually, that responsibility shifts to the young adult. At the same time, the young adult may also be separating from their parents geographically, emotionally, and financially. With so many demands on a young adult’s mental, emotional, and financial resources, diabetes care may fall to the wayside.
The diabetes care gap during transition from pediatric to adult diabetes care is real and significant. At the ADA Scientific Sessions, the study group mentioned that 46% of young adults report dissatisfaction with the transition process. As many as 20-30% of young adults drop out of care altogether. This means not one single visit for diabetes care in a year!
Enter the concept of a structured transition program. Would you teach a nervous young child to swim by throwing him into the deep end of a pool? Probably not; gradually introducing him to the water with age-appropriate lessons would probably result in a better swimmer and a happier child. A structured transition program can provide young adults with additional support they need to take on the task of managing diabetes on their own. Structured transition programs can take various forms, such as a dedicated young adult clinic, a dedicated Transition Coordinator, or a young adult support group.
There has been much discussion about the need for structured transition programs. There have been some observational studies, but no randomized clinical trials have been done in this area until recently.
About the study
The multi-center, randomized study enrolled 205 youth, ages 17-20. At the beginning of the study, all participants were seen in pediatric care. After six months, they all transferred to adult care. The study continued for one year after the transition. During that year, half of the study participants received standard care in an adult setting, with no intervention programs (the “standard care group”). The other half of study participants received standard care in an adult setting, along with a structured transition program designed to help with the transition from pediatric to adult care (the “transition group”).
Key components of the structured transition program:
- The study assigned a dedicated Transition Coordinator to help participants in the structured care program group.
- The Transition Coordinator was a certified diabetes educator.
- The Transition Coordinator attended clinic visits with the patients.
- Patients could contact the Transition Coordinator between visits by text, email, or phone.
- The Transition Coordinator helped patients solve specific diabetes problems and helped them navigate the health care system.
The study results indicate that structured transition programs can provide continuity and consistency from pediatric to adult diabetes care. Over the study period, patients in the transition group attended more clinic visits compared to patients receiving standard care. Also, patients in the transition group were more satisfied with their care than patients in the standard care group. Furthermore, they reported less emotional burden of diabetes. Interestingly, A1C levels did not differ statistically between the two groups. However, researchers did see a trend towards improved blood sugar control in the transition care group. They did not see the same trend in the standard care group.
The team is planning a follow-up study with the same participants. In addition, the team will conduct an economic analysis to see whether the structured transition program results in any health cost savings. If it turns out to be the case, the team plans to recommend that a transition coordinator become part of standard diabetes care for T1D youth.