Table 2 Determinants of transition key quotations: The process of healthcare transition

Timing of transition

“One of the barriers sometimes in the timing is if you’re waiting till someone finishes school to transition them, not knowing where they’re going to be going to uni, where they’re going to be living. And so that often [causes] delays… They’re often sort of into the half of the year post finishing school before they’ve actually either sometimes started the transition process, or at least had a referral sent.” Paediatric HCP 19

Preparedness for transition

“I didn’t even realise there was like that sort of transition period into an adult system. I suppose I didn’t really get given much information about it, or even realise, ‘oh, actually, I need to transition from paediatric into the adult system’. So, it was very much just as soon as I turned like 18, it was like, ‘oh, okay, you need to start looking for new immunologists’, and things like that… I think I would have liked to be given more information.” AYA 10

Transition gaps

“I certainly think the single biggest issue remains the kind of fall off a cliff transition model that we have where you basically go, paediatric service [here], adult service [here], and there’s that massive chasm in between.” Paediatric HCP 21

Specialist transition services

“There are a number of patients that we look after that might not meet the transition team guidelines and yet still would benefit from that expertise in terms of empowering them to navigate, they’re still going to have to navigate the adult world of health care, which is so different from the paediatric world. And although we can use their resources, I think they do miss out from having that expertise.” Paediatric HCP 27