Table 3.

Themes and illustrative quotations by pediatric division or care program leaders regarding HCT.

Theme	Illustrative quotations
Theme 1. Significant heterogeneity in the HCT process exists within most divisions/programs.	“Practice within my division is extremely heterogeneous, meaning that there’s wide variation in practice.” -Participant 21 “I think it’s case by case and provider by provider. We don’t have like a formal process.” -Participant 15 “It is incredibly variable and there’s not a system in place per se. We write it [HCT] in our notes if it’s a discussion we’ve had. But beyond that, we really don’t have an organization around that process.” -Participant 26 “There’s a lot of variation and we find that to be an issue.” -Participant 18
Theme 2. While some groups have their own HCT practices, there is no coordinated institutional HCT approach.	“There’s not a policy that says by age X you need to be transitioned.” -Participant 19 “But the patients with the more unusual or rare conditions I tend to continue to see on the peds side, despite age.” -Participant 1 “I think that we all recognize that this is a very vulnerable period for patient populations when they go to the adults. And so I do think having formal processes in place for chronic care kids, which is really what we’re talking about, would be incredibly beneficial.” -Participant 12
Theme 3. Participants find HCT difficult if they perceive the lack of an equivalent adult specialist for a patient’s specific medical condition.	“I have one patient who’s in their thirties that they have a rare genetic disorder, and there’s no adult Genetics Department. So they have asked that they keep coming back to see me so that they can have their care coordinated here.” -Participant 16 “We need to identify providers that are willing to care for these folks. I don’t know who is available to care for these medically complex young adults. Many providers say, ‘No,’ they won’t accept the patient. They’re too complex. So it’s very difficult to find. It can be difficult to find even a PCP.” -Participant 9 “I struggle to find providers to treat autism symptoms like sleep problems, behavior problems, ADHD, anxiety, depression. There are very few adult providers out there, and there are very limited resources, so that’s a struggle.” -Participant 21 “The one that limits me from transitioning patients on the adult side is the lack of [adult] physicians who have an interest or knowledge of how to care for these patients.” -Participant 6
Theme 4. There is a lack of coordinated handoffs from pediatric to adult providers.	“The communication between the adult world and the pediatric world is not great. So I’m left struggling with patients.” -Participant 9 “No, we don’t necessarily have a formal, like, written sign out. And again, I think it’s case by case and provider by provider.” -Participant 5 “We have the process of filling out a release form, but we don’t necessarily have a warm hand off or other established forms of sign outs. I think on a case by case basis, we will sometimes reach out to the new provider if we know where a child will be establishing care.” -Participant 23 “I think where this falls apart is if a young adult never tells us where they’re going.” -Participant 21 “Some people do a different note when they are ready to transfer. Some people use their last clinic visit note and summarize everything in that note. They can do it in the last note, or they can do a different note – different people do different things.” -Participant 13
Theme 5. Participants desire ancillary staff to support HCT.	“More people, more manpower. And at one point, again, before COVID, we had a nurse that joined our transition program. The health plan allowed her to do that, to come to the clinic because I think it was part of her responsibilities to make sure that young adults would transition safely and would follow with all the things that are part of the standard of care. She was fantastic because not only would she talk to the patients in clinic, but then she would follow [up] with them on the phone. But that person then had to leave. So again, it’s manpower. We were able to do a lot with her.” -Participant 13 “That’s the other aspect. How much we can invest in a little bit of more manpower to do these things that take a little bit of follow up and that we cannot do right on our own. I think we have a lot to improve that we could do with more manpower.” -Participant 17 “This process requires involvement from a lot of people.” -Participant 6 “We’re all so busy. That’s another entire initiative that takes staffing and building and money, and we don’t have that.” -Participant 28 “The coordinators are really the key person for continuing this transition.” -Participant 27