Encouraging a GREAT Transition from Pediatric to Adult Diabetes Care

For young adults with diabetes, the transition from pediatric to adult medical care can be difficult. Sarah Lyons, MD, director of quality and safety for pediatric endocrinology, and Marisa Hilliard, PhD, pediatric psychologist and director of the Resilience and Diabetes (RAD) Behavioral Research Lab at Baylor College of Medicine, have worked together to improve transition preparation for adolescents and young adults with diabetes at Texas Children’s Hospital since 2014. Their GREAT diabetes transition program, which stands for Getting Ready for Emerging Adulthood and Transition, focuses not only on the healthcare transition from pediatric to adult care but also on the transition from adolescence to young adulthood.    

“Through our multifaceted approach to transition preparation through patient/family education, quality improvement initiatives, and research, we hope to improve the clinical care, patient experience, and diabetes-related outcomes during this challenging time,” said Dr. Lyons.  

“The longer the gap between pediatric and adult care, the worse the outcomes are for young adults, and it’s common that there are long gaps. We want to be supporting self-management and quality of life during that time, to hopefully help young adults make that transition smoothly,” said Dr. Hilliard.   

Unique challenges in young adulthood 

Young adults face substantial life changes that can sometimes take priority over the need for finding a new endocrinologist. Many at this age are moving out of their parents’ house, possibly to a new city for work or college. Finding a new doctor and navigating changes in insurance coverage are challenging. Additionally, their brains are still developing and they are solidifying the executive functioning skills necessary for managing day-to-day life with less parental oversight. 

“Figuring out where and how to prioritize diabetes management and then also tackle this big move from one health care provider to another is just a lot to ask, and as much as we try to teach and prepare teens and young adults, often they don’t get a lot of directive education, feedback or practice with these skills before they leave pediatrics,” said Dr. Hilliard.  

The Diabetes Transition Program at Texas Children’s Diabetes Center has been working hard to make the move to adult diabetes care easier. Dr. Lyons and a colleague have a diabetes transition clinic that focuses on diabetes management and preparation for adult care.  To help patients identify an adult provider, Drs. Hilliard and Lyons have created a list of local adult diabetes clinics. They have offered life after high school outreach events called “Adulting with T1D” to help teens with type 1 diabetes and their parents prepare to move on to adult providers. With funding from the P. and C. Carroll Foundation, they developed a series of videos to increase access to valuable information about the transition, featuring interviews with four adults who previously received diabetes care at Texas Children’s. Upcoming Carroll Foundation-funded initiatives include a regional educational event to equip adult providers with knowledge about medical, developmental, and psychosocial issues to help them be more prepared to receive young adult patients in their practices. 

DiaBetter Together study 

To continue their efforts to improve the transition to adult medicine, Drs. Hilliard and Lyons launched the DiaBetter Together study in 2019, which is funded by the National Institutes of Health. In this randomized clinical trial, they investigate the effect of a strengths-based peer mentor intervention on glycemic and behavioral outcomes in young adults with type 1 diabetes over one year during the transition from pediatric diabetes care to adult medicine. After leaving Texas Children’s Hospital, young adults are randomly assigned to either regular care, or to a peer mentor who has been through the transition. The peer mentor talks regularly with their mentee over the course of a year, offering support and resources “to hopefully help them get to adult care sooner and with better diabetes outcomes,” said Dr. Hilliard. 

While it is too early to guess what the statistical outcomes of the study may be, Drs. Hilliard and Lyons have heard positive feedback from people who were assigned a peer mentor in the study.  

“They felt like it helped them solve some problems and really feel understood during this process,” said Dr. Hilliard. 

“If the study shows that having a peer mentor makes a positive difference for the primary outcomes, this could then be implemented into pediatric clinics by having peer mentors available to help guide and counsel individuals as they leave pediatric care. For adult diabetes clinics, they could potentially have peer mentors who would welcome young adult patients into their clinic and provide non-medical support as they become established,” said Dr. Lyons.  

Looking to the future 

Drs. Hilliard and Lyons are hopeful that their multifaceted transition program will illustrate to other clinics different ways to educate and support adolescents and young adults making the transition from pediatric to adult diabetes care.  

Even if a formal mentorship program is not possible, Dr. Lyons recommends that pediatric providers give teens and young adults who are leaving their center ample time and education to prepare them to find an adult diabetes provider. Making use of established community resources can help young adults take the lead in their diabetes care during this transition. For example, the College Diabetes Network has many resources for young adults (in college and not) to connect with peers, the American Diabetes Association’s directory of mental health providers can help young adults find psychological support, and DiabetesWise.org offers user-friendly information about diabetes technologies.  

“It’s really important to learn about and really think through the unique experiences of this transition time period and this age group,” said Dr. Hilliard. 

Those unique experiences not only play a role in how young adults will manage their diabetes, but also how they will interact with their new provider in adult medicine.  

“It’s important in this age group to not judge their diabetes, but to let them teach you about their diabetes and then build and create a management plan from the patient’s perspective,” said Dr. Lyons. 

For more information about Texas Children’s Diabetes and Endocrinology, visit texaschildrens.org  

Additional resources 

Sarah Lyons, MD and Marisa Hilliard, PhD, co-editors (2019). “Transitioning from Pediatric to Adult Care in Endocrinology: A Clinical Handbook.” Springer Nature. 

American Diabetes Association Directory of Mental Health Professionals 

College Diabetes Network 

DiabetesWise.org