Growing up with Diabetes: Transitioning from Pediatric to Adult Care

As they age, children who are diagnosed with diabetes shift from care supervised by parents or caregivers to self-care. Ultimately, they must leave their pediatric care providers and find internists and other caregivers whose practices target adults.

Many experts have found this transition period is filled with concerns and care gaps. In addition to their self-care responsibility, young diabetics must handle their interactions with a healthcare system that is wrought with suboptimal care utilization, deteriorating glycemic control, acute complications, and chronic complications.

Researchers from several Boston healthcare organizations published a study in the January-February issue of Diabetes Educator that explored patients’ perceptions of their relationships with providers as they transition from pediatric to adult type 1 diabetes mellitus (T1DM) care.

The study sample was comprised of 26 emerging adults with T1DM and a mean age of 26 years who attended 5 focus groups stratified by current level of glycemic control. The researchers conducted thematic analyses of those group meetings and found the emerging adults tended to discuss 3 major themes:

1. Loss and gain across the transition. Patients with a mean glycated hemoglobic (A1C) of 7.4%, which indicates better glycemic control, expressed sad reluctance to leave pediatric care and move to adult care. However, others indicated this was part of the “natural progression” from childhood to adulthood, especially if they did not feel attached to their pediatric providers. Those with the poorest glycemic control tended to indicate that they wanted to make the transition to adult care.
2. Partners in care versus object of care. The participants indicted that adult providers’ collaborative conversations promoted patient involvement and accountability compared to “parent-centric” interactions with pediatric providers. This was valued highly, even on a background of ambivalence over increased independence.
3. Improving provider approaches to transition. The participants had great insight on areas where pediatric providers could improve, which demonstrated pediatricians should actively promote emerging adults’ autonomy. The participants acknowledged a need for ongoing parental support, communication with adult providers, and follow-up with transitioning patients.

Patient-provider relationships are complex, and severing them can be uncomfortable and challenging. It can be particularly difficult when good provider-patient relationships have resulted in tight glycemic control, which explains why the authors of the present study valued the patients’ perspectives.