One of the most important times in everyone's life is that transitional period between being a kid and becoming an adult, and for those with diabetes, it's an absolutely critical juncture in learning how to live well with this disease.
Late Summer/early Fall is of course a time when many youths are moving from high school into a new college environment, so it's an ideal time to learn all there is on #AdultingWithT1D -- which happens to be the title of a new workshop held in mid-June at Texas Children's Hospital Pediatric Diabetes and Endocrinology, but moreso it's almost a modern mission statement on how diabetes clinical care is (finally) being addressed for young adults.
This Texas hospital in 2016 established an actual "Transition Clinic" for older teens with T1 focusing on intensive D-management and preparation for adulthood, and within that, they started what's called a Transition Navigator Program, featuring a full-time guide ("navigator") who meets with families to talking about this transition period and determine each family's personal needs and goals, and also meets with the providers -- Drs. Marisa Hilliard, Sarah Lyons and Jake Kushner -- along with educators and social workers to help them best support teens and families as they prep for that transition to adult care.
Texas Children's has six campuses around the Houston area, and there are roughly a few-thousand teens and young adults within the system. Program director Kierra Lee says she's seen about 90 people so far within the specific Transition Clinic itself. Each week, the see at least 10 teens and families to talk about "adulting with diabetes."
On June 17, the Transition Clinic held its first #AdultingWithT1D outreach event that brought in more than 50 people, and the organizers hope to replicate it in the future and even convince others across the U.S. that more of these outreach events on the child-to-adult transition for PWDs (people with diabetes) should be offered, as this is an underserved need nationwide.
Topics addressed at their first workshop include:
- Leaving high school
- Managing diabetes while in college and/or work (including stress, alcohol, crazy schedules, etc.)
- Parents’ changing roles
- Navigating insurance and access issues, from cost to coverage
- Finding an adult endo instead of a pediatric care team
- Resources and peer support that exists for college-aged PWDs, including scholarship opportunities
Not surprisingly, the issues of cost and insurance were a big focus. Lee says their clinic is looking into more resources for families on how to help young PWDs deal with these issues on their own, rather than having parents coordinate everything.
"The cool thing was that this was specifically for those older teenagers going through this transition period," Lee says. "For the younger kids, you have camps that they enjoy going to, but as they get older they don't go as much and so they miss the connections of being around somebody else who understands what they're going through in day-to-day life. That was the idea, for this to be a one-stop shop for those who are post-high school and getting ready for that adulting."
Lee says there were countless examples of teens who'd never met another PWD before, connecting and talking about issues such as how they react when their parents ask about diabetes care, or how they talk to friends about these health issues.
"It's not something you can facilitate, because it just happens," she says.
The College Diabetes Network was involved too, not as a program organizer, but as a resource brought in for the inagural workshop. CDN founder and fellow type 1 Christina Roth was a speaker sharing her story and highlighting the many CDN resources they've created throughout college campuses across the country.
The event was met with great enthusiasm.
Here's a snapshot of some representative feedback:
“GREAT!! THANK YOU :) The guest speaker provided me with the knowledge and support that my daughter is not alone and that the next chapter in her life could be exciting despite the inconvenience of living with T1 Diabetes. Thank you!”
“There was a variety of different facilitators, professionals—including patients and parents. A lot of first-hand knowledge on the topic.”
“Thank you SO much for hosting this event. This really helped me realize that there is SO MUCH help involved in living with T1D.”
“I liked meeting others who experience the same things”
Being diagnosed myself at age 5, I know the struggles in these years well -- it was the first time I was on my own, and at the time I didn't want to talk diabetes or let it define my life, so I kept it largely off the grid. At the time (late 90s and early 2000s), I wasn't wearing an insulin pump or CGM and certainly didn't want to pull out a fingerstick meter multiple times a day. I didn't have a regular endo then either; instead I saw a primary care doctor for my basic meds and pretty much managed everything else on my own -- when I was actually managing diabetes at all.
I can only imagine how a program like this, and the resources that CDN offers now, could've improved my approach to diabetes then and now, and helped me find some much-needed peer support in those volatile years.
In short, it's fantastic to see transitional care becoming a more visible trend, and this program in Texas sounds like a great model to build out.
Any clinics, doctors, CDEs, etc. reading this? Please connect with Texas Children's on best practices for supporting young adults with diabetes and their families who so very desperately need support!