Managing the Transition of Care for Patients with Type 1 Diabetes

The Endocrine Society spearheaded an initiative to develop transition of care resources specific to type 1 diabetes. A working group, comprised of physician representatives from the Society, Hormone Health Network, American Academy of Pediatrics, American Diabetes Association, Pediatric Endocrine Society, American College of Physicians, Juvenile Diabetes Research Foundation, International Society for Pediatric and Adolescent Diabetes, and American Association of Diabetes Educators, was formed to evaluate gaps related to care coordination and patient education. Following a comprehensive literature review, the working group found a number of gaps and developed the following resources to address these needs:

  • A Provider Assessment of Patient Skill Set. The checklist will be used to start a dialogue between the pediatric provider and their patient to begin preparing for this transition and to ensure that the patient is given the information they need to successfully prepare for managing their diabetes without parental supervision.
  • A Clinical Summary. This transitions template will used by the pediatric care provider to summarize the patient’s medical record, which is then transferred to the adult care provider.
  • A Patient Self-assessment of Worries, Concerns, and Burdens Related to Diabetes. This resource provides an assessment of relevant psycho-social, familial, and cognitive factors that the adult provider should be aware of when caring for their new patient.  
  • A Recommended Approach to the Adolescent Transitioning to the Adult Practice. This resource serves as a receiving guideline for the adult provider and includes information on how to begin the final phase of the transition. This guideline provides a background for transition visits and an overview of the resources that have been developed to assist with this process.
  • A Recommended Approach to Planning For Pediatric Practices. This resource is adapted from Got Transition’s six core elements of health care transition to provide pediatric practices with a recommended approach to transitioning its patients.
  • Educational Fact Sheets on Issues Faced by Emerging Adults with Type 1 Diabetes. This resource identifies topics that the new patient may have questions about like alcohol and diabetes, insurance issues, preventing site infections, etc. The topics will be linked to associated fact sheets that the provider can access and print-off when discussing these issues with the new patient.
  • A Welcome to the Practice Guide. The welcome to the practice guide serves as a guideline for the new providers on how to develop individualized resources for their new patients with information on location/transportation, after-hours contact information, lab testing/results, etc.
  • A Visitor Information Form. The form would be used by the emerging adult when first seeing their new provider to let them know who can be informed of personal health information or be allowed in the room with the patient during examination. Research suggests that stating these preferences verbally may be difficult for some emerging adults and that written consent would be helpful to the new provider.

The Society will continue to develop transitions resources over the coming months specific to congenital adrenal hyperplasia, turner syndrome, and growth hormone deficiency.