Table 2 Summary of Themes and Subthemes with Sample Quotes

1. Transition practices should be flexible and individually tailored

It’s just a patient by patient basis, like if the patient feels comfortable moving on, they should move on, but if they don’t feel like they’re quite ready… so just ask the patient, I guess, and kind of gauge the patient’s feelings on it. (Participant 11)

 1b. There are varying levels of acceptable medical autonomy for survivors

When I was in the pediatric clinic, my parents were super involved…And then I felt like the providers in that clinic were very open to that, and then I felt like maybe in the adult clinic it was kind of expected to be a little bit more just about the patient and less about the surrounding caregivers. I felt like they focused more on me as opposed to family. (Participant 10)

I think them really communicating with me is what made it easiest. That’s the key to making a successful transition is having that communication, whether it be on the phone, through email, through physical mail, or any way that they can get that communication to you. (Participant 12)

3. Survivors desire continuity during the transition

 3a. Reliable transfer of medical information to new providers is key

One of the most important things would be having a seamless transition in the sense that you felt like the provider you were transitioning into was fully aware of your background and even some of the personal aspects of your care, and the whole package that you had in the pediatric clinic going into the adult clinic. (Participant 9)

 3b. Consistent provider(s) during the transition is helpful

I think having a care team and a support system that really kind of goes on that journey with you…… [is] definitely important, just to have a transitional team that rides with you, even if you’re changing healthcare systems or if you’ve moved and just having a place to land wherever you go. (Participant 14)

4. Comprehensive care means care that also addresses psycho-social well-being

 4a. Educational messages on health insurance are timely and very much needed

I’m still 25, I work as a nurse and they offer me health insurance obviously. Because of all the health insurance issues and all the medications that I still need to take, I haven’t made the switch yet, so I’ll be doing that this fall, and I’m just worried about how the whole thing will go and what’s going to be covered and what’s not anymore. (Participant 18)

 4b. Support during life transitions is a necessary component of psycho-social support

[The care team was] just really helpful in meeting those needs for me, whether it be social work, or legal, or things like that. Besides just the primary care piece, I think they just helped me with other issues that I was considering or thinking about as I was an adult by myself. (Participant 7)