Table 3 Determinants of transition key quotations: Healthcare Provider Factors Impacting Healthcare Transition

Connection between paediatric and adult healthcare providers

“We’d have clinics where we have the adult endocrinologist and the paediatric endocrinologist turn up, and I stopped being involved in any of those for the reasons that it was dependent on all people being available at exactly the same time on exactly the same day. And invariably, one of those three or four would say, just before, I can’t do Thursdays or thanks for that, can we reschedule to next week” Paediatric HCP 17

Treatment summaries and information transfer

“Yes, I think the challenge we have is that we don’t share the same records as the paediatric space. So sometimes, I would like to look back at some of the previous imaging, for example, and I can’t, I don’t have access to it unless we go through that laborious process of getting it. So, the handover is brief. It’s usually a one-page letter.” Adult HCP 03

Disparities between paediatric and adult care approaches

“Going from the Children’s [hospital] to the adult care, it’s almost like going from flying business class to economy class. Because it’s unfortunately a reality, you have so many services providing excellent care in the paediatric space. And many critical figures in the paediatric space are then missing in the adult world… [there are] a very limited number of specialists who can address those comorbidities in the adult setting.” Adult HCP 07

“At the Children’s Hospital, they get all the specialists in the room… everyone just seemed to know what was going on. Whereas in the adults, they kind of expect you to tell your story and then you see someone different every time as well, which makes it really, really difficult.” AYA 14

General Practitioners (GPs)

“We were told, on many occasions, get yourself a good GP. Well, that’s easier said than done, you know, the good GPs either don’t take new patients, they’ve retired, or they’re just not out there. And to be fair to the GPs, they haven’t got the expertise, and they haven’t got the time to be dealing with a lot of the issues that our children have got. So, I think that that’s really unfair to put that onus on them, as well.” Parent 03