Table 1 Representative quotes for themes and sub-themes

Readiness for the transfer of care

“We went through… a checklist of… my medical history and my medication… she kinda helped me prepare… how the visits would… look different… the population area would be different.” (Participant 2)

“By the age of 16, she wanted me to come in alone and… it kinda helped me just be more independent in that area.“ (Participant 2)

“Just feeling used to doctors’ appointments and,… talking to doctors and being around nurses and all of that, like I just felt that kind of prepared me.“ (Participant 1)

“I did feel prepared, I felt super prepared, and then, she completely changed it [the plan], and, and sprung it up, and then I had to put it all back together and convince them to let me go to the other place [Transition clinic vs Adult Rheum office].“ (Participant 5)

“I consider myself extremely lucky… I took part in a research study when I was still in pediatric care… one of the biggest modules was self advocacy… So when I went into adult care, I felt that I had a lot of tools already… in my tool belt, so to speak… like, making lists before you go in. That you make sure everything gets checked off on your list and not leaving until you have done everything you need to do and have got all your medication, and all that stuff. So, um, I considered that probably one of the greatest resources I have had in my pediatric care.” (Participant 3)

“When it came towards… the end it was… really upsetting and also… I was really anxious, because like, I wasn’t prepared to be in… a whole new environment… it kind of felt like starting from… scratch, like from the start with a whole new doctor. So I was kind of like nervous and stuff.” (Participant 2)

Developing self-advocacy skills

“The things you need to transition are learned skills, they’re not skills that come naturally. And so, of course, if that’s the case, you have to.“ (Participant 3)

“I participated in… an online course on JIA and self-advocacy… This was the greatest resource I had in pediatric care.” (Participant 3)

“I like to know what… my own responsibility should be when it comes to being transitioned into care. My pediatric rheumatologist was really helpful with that… We went through… a checklist of my medical history and my medication… [She] helped me prepare for how the visits would kinda look different and how the [waiting room] population area would be different.” (Participant 2)

Changing relationships

“I love my pediatric rheumatologist so much… she’s seriously just that awesome and I’ve known her since I was… three. So, it was a lot of bonding happening with her and I, so having to [say] goodbye to a doctor, but also, kind of a friend… it was hard.“ (Participant 4)

“I loved my rheumatologist; she was really nice and [so was] the nurse there and we would always bond, and she would always make it such a safe environment. So, I [was] always comfortable to tell her what was wrong and everything else. But then, when it came towards the end, it was really upsetting… I was really anxious, because I wasn’t prepared to be in a whole new environment… it kind of felt like starting from scratch.” (Participant 2)

“I’ve only seen this new doc - my new rheumatologist like, four to five times, because I usually go every six months. I haven’t been able to really establish a trusting, safe environment with him where we can have… similar conversations of how I would have with my previous rheumatologist.“ (Participant 2)

Culture shock

“I think it was a really stressful time. It would have been a bit nice to… talk to other kids going through the same things. Going from seeing a lot of kids to adults in their 50s and 60s was really hard, because I was 18… It was a big pill to swallow.“ (Participant 4)

“You went from being surrounded by kids to being the youngest one there surrounded by like adults who are in their like, 50 and 60s. So that was definitely different.” (Participant 2)

“I feel as though changing the structure which the pediatric appointments are conducted in rapidly is not a good… Is not good for the patient. Um, I think following a similar structure in terms of length of appointment and, um, how it is conducted, I think would provide a more seamless transition.” (Participant 5)

New responsibilities

“A sudden drop-in support was very jarring because it just really added to all these new responsibilities. And, you know, it was all in one appointment and then you had to outsource and all that [allied health care], so I just think that if you had more… continuity of care, it would be less… shocking, like being tossed in a cold pool.“ (Participant 3)

“It’s almost like, I went from a teenager to… a young adult with a part-time job that was basically just taking care of appointments and medications and… it takes a lot of time and energy out of [you].” (Participant 1)

“My rheumatologist helped me get resources on [insurance policies]. It was eye-opening… I was not educated on this at all. It was difficult to navigate.” (Participant 4)

“The fact that there isn’t… a care team, it is difficult. It’s almost like, I went from a teenager to a young adult with a part-time job that was basically just taking care of appointments and medications… It takes a lot of time and energy out of yourself to make sure that you’re getting proper care.” [Participant 1]

Social support

“I think that the support of my family was super important in transition.” (Participant 5)

“Transitioning can be a very… isolating experience if you don’t have… support.” (Participant 1)

“I found… it’s easier just having somebody knowing what I’m feeling or… having my mom… at appointments.” (Participant 1)

“… I did have my mom… at my first couple of adult rheumatologist appointments… I think that sort of helped… me being able to speak up… ‘cause at the next one where she wasn’t there and I was all alone, it was like you are the only one who can advocate… like you’re the only one there for yourself.” [Participant 1]

“I talked to my mom about… the idea of… not being able to take… your parent or… a support person in, and she said that that was… something that was really stressful for her.” (Participant 1)

“Just seeing… 10 kids in a room that all have arthritis… just feels kind of… uplifting. Like you’re just… validated, like you’re not alone anymore.” (Participant 1)

“… if I was able to connect with other people who had arthritis.you won’t feel so alone and you have someone who can relate… ” (Participant 2)

“One really good resource that I had was the disability services through the university… so that was… a good support and sort of, a backbone to… help me how to figure out what I can and can’t do and then support me with talking to profs, or.changing my schedule.” (Participant 1)

Mental Health Support

“I grew up always… being told… you can do anything, don’t let your arthritis stop you… I wish that I would have known more… , and [had]… been a bit more realistic about what my limitations were… so that I didn’t struggle so much [at the start of university].”

(Participant 1)

“Stress… really impacts… my arthritis… it can be definitely a contributor… in flares and that, … is part of mental health.” (Participant 5)

“I’ve also had… a positive impact on my mental health with transitional care because I felt like I had… more of… a self-accepting journey… as I got older, and I… was able to… connect with other people who had arthritis.” (Participant 5)

“There was this service called clinical health psychology. So, they were there to support you when talking about like transitioning or kind of the mental health things that go along with you just being in pain all the time… and… not having others your age to relate to. So that was a really good service. It was… a good way for me to ease into sort of, what counseling or therapy would be like. And then to be able to be comfortable talking to somebody about what I was feeling… not just on a pain level anymore.” (Participant 1)

Ongoing support needs—beyond the transfer of care

“My adult rheumatologists are basically there for… my biomarkers and… what… my blood tests look like… so they don’t check in as much… with mental health and… I’m not even sure how much [information about mental health] to bring up to my adult rheumatologists.” (Participant 3)

“I think having a psychologist built into [a] transition clinic or adult [clinic]… would be great. And I think then more people would access those mental health resources.” (Participant 5)

“The most beneficial would be… relationship and social support, especially with youth who are also dealing with this and are about to transition. In my personal experience, I have never seen a person my age in the waiting room [in adult care]. But, when I go to camps and other meetings, I [think], ‘where have you been my whole life?’… If [there were] more support groups… [it] would be beneficial for people to relate and connect with each other, and also share resources and support with each other.” (Participant 2)

“I would argue that you can prepare to a certain degree… and then, it would be nice that when questions come up… you have something to [draw] on, um, for those resources. " (Participant 3)