Mind the gap: Optimizing the transition to adult care in juvenile idiopathic arthritis

Natasha: I think many people, including myself at the beginning of my career, thought of JIA as a kind of mini rheumatoid arthritis in children. I like to think of the differences in two buckets: medical differences and psychosocial differences.

From a medical point of view, I teach my trainees that there are two distinct features of JIA compared to arthritis that develops in adulthood. The first is the jaw. Children can get jaw involvement from the autoimmune arthritis, whereas in the adult population we just do not see that; most adult jaw issues are more mechanical or local in nature, from wear and tear. The second is uveitis. Adult patients can also get uveitis, but in children it is asymptomatic. So they need that regular screening. We do not actually know how long they continue to need that screening into adulthood, but children are routinely screened on a yearly basis, whereas for adults we do not recommend screening, we simply say, if you have symptoms, get it checked out by an eye doctor.

Then there is the second bucket: psychosocial differences. JIA is very different because it develops in childhood, and we see that manifest in two ways. Once they come into adulthood, some young people are very well versed in the medical system. They know their disease, they know their medications, they know how to navigate the healthcare system, sometimes even more than adult patients do, because they have been in the system for so many years. But on the flip side, they can also have difficulty coping because they have always had somebody else managing things for them, whether that is a caregiver or a parent.

Gina: Thinking about these children, what do we see in terms of morbidity and mortality, and of course their quality of life, when they are living with this condition?

Evelyn: Thanks, and thanks to Natasha for explaining the differences so clearly. In terms of morbidity in JIA, one of the things we see most often is reduced mobility. We can also see joint damage, and when that happens in children it is particularly significant, because it is their body for the rest of their lives. That is one of the major morbidities — joint damage, limitations in range of motion, reduced mobility.

In addition, there is the social impact. As Natasha touched on, there are real mental health consequences. These children are missing school for appointments, taking medications every week that often have side effects. It can feel quite isolating. Since it is a relatively rare disease — about one in 1,000 — many children do not know another child with JIA. It is not like asthma or allergies, which are more prevalent. The other morbidities Natasha mentioned, the uveitis and jaw involvement, are things we always monitor for. I have been surprised by how many patients we see in our adult clinic who had JIA with uveitis, were in remission, and then flare again in adulthood.

Mortality is extremely rare, we really do not see it in our patients. One subtype, systemic onset JIA, can sometimes land patients in hospital with an overwhelming inflammatory response, but that accounts for about 5% of JIA patients, and hospitalisations are not that common. Quality of life can certainly be affected — depression, anxiety, chronic pain, fatigue, and family stress are all real factors. But honestly, it is a very happy speciality and a happy clinic to work in. Most patients do really well, are quite positive, take their medications, and live full, active, and meaningful lives.

Gina: That is great to hear. So from your perspective, Natasha, as these children reach adolescence and you start to get involved in their care, how do you see the condition evolving?

Natasha: If you look at the literature, we are not entirely sure, because a lot of the time we lose track of these patients after the age of 18. But most studies suggest that over 40% will continue to have active disease into adulthood. In terms of what that looks like, as Evelyn said, we have seen all patterns. We have seen young adults who come to us from pediatrics still flaring, but who then go into remission. We have seen patients who were in remission throughout childhood, and then flare at 20 or 21. We have also seen people who have been in remission since they were very young, aged five or six, and stay that way. So all patterns are on the table, and we do not really know what happens to most of them as they age into their 20s and 30s.

One important difference is that we can see damage early, and in a growing skeleton that damage looks different. We can see short stature, shortened limbs, and limb deformity.

Another thing we see in many settings is the reclassification of the disease. A patient may have JIA, but present in a way that looks like psoriatic arthritis or rheumatoid arthritis. Part of this is logistical, in certain jurisdictions, JIA has a limited number of approved drugs, so we may need to reclassify the disease to access more treatment options. That can be quite jarring for patients who have always identified as having JIA, not RA. But it is done more for logistical than medical reasons.

Gina: So given that around 40% of these young people will carry their condition into adulthood, how many of them do you think will require long-term treatment for the rest of their life?

Evelyn: This has actually surprised us quite a bit. Many patients come into our clinic on no medication, or on a very stable dose and not flaring. But then, honestly, at some point during their young adult journey, they start having flares, or they start having pain, or we are not able to wean them off their medications. The exact percentage is unclear, and we are currently studying it. But for me, since doing this clinic, it is honestly a lot more than I expected when I was a pediatric trainee. This just highlights the need for consistent follow-up and management to make sure these young people do not fall through the cracks.

We do have some patients who fall through the cracks, they see us once, disappear for a while, and then show up in a very large flare. They access us when they need us and forget about us when they do not. Unfortunately, most do come back at some point, particularly if they have not been taking their medications. We try to accommodate our patients as best we can, and be flexible given their busy lives.

Gina: What you have just said really highlights the importance of a successful transition period. At what age will young people typically transition into adult care, and ultimately transfer to adult care?

Evelyn: It typically happens one to two years beforehand, so usually around the age of 16 or 17. That is actually not a lot of time when you consider that you may only be seeing the patient two to four times a year on average, maybe a little more if they are flaring. You do not have many visits to address this.

I think it highlights the important difference between transition and transfer. Transition is a process over time where the provider, the patient and the caregiver are working together to prepare the young person for adult care. Transfer, on the other hand, is literally the act of moving from pediatric to adult care. The process of transition should ideally begin around the age of 12 to 14, that is what we have found, and what the literature supports. The eventual transfer to adult care can happen anywhere from age 17 to 19. In some places, if there is no adult provider available, pediatric colleagues end up holding on to patients into their early 20s simply because there is no adult rheumatologist in the area to take over.

Gina: I recently read a paper in the Clinical and Experimental Rheumatology journal stating that around half of transitions from pediatric to adult services are unsuccessful. That seems like quite a large number. Why do you think this transition period is so challenging?

Evelyn: Since JIA can present so early, at that peak of two to four years old, some adolescents or young adults, when they are ready to transition, have had one provider for their entire lives. That provider has been managing not just them, but their parents and the whole family. And then all of a sudden there is a time limit, and they have to switch to another practitioner. That can be very jarring. They have built up enormous trust and a sense of identity around that one provider, and then it is done. Making the switch, trusting a new system, feeling comfortable with a new team, that can be really challenging.

Some adult providers are also not as comfortable with parental involvement. That cut from the parent is difficult for the parent, but also for the adolescent who has had them throughout their whole life. And as Natasha has said, proper coaching throughout the pediatric journey, so that they know their condition, their medications, and how to advocate for themselves — is really key, but it does not always happen.

There are also many other changes occurring at the same time. These young people may be changing schools, moving away from home for the first time, starting new jobs, moving abroad, navigating relationships, and building friendships. It is a particularly turbulent time in their lives, which is why it is so important to offer a flexible approach during these transitions. The literature also highlights the importance of having a dedicated transition coordinator, a single point of contact who can act as a bridge, but that person is often not present in many clinics.

Natasha: I would add that most health systems are quite siloed and piecemeal, and it is even hard for adults to navigate them. I always try to have that conversation with young adults: it is complicated, and we are a bit siloed in different places. Even patients in their 40s and 50s struggle to navigate the system and get the right answer at the right time. That does not mean you should not learn how to do it and advocate for yourself, but it is something we need to acknowledge.

Gina: What are the risks if the transition does not go well?

Natasha: First and foremost, the patient drops out of the system entirely and never gets to an adult provider. Or, as Evelyn describes, they see us once or twice and then disappear. If they do not come to their appointments, their disease can get worse. They lose access to medications — and remember, these are patients who may be on biologics that require monitoring for side effects and can only be prescribed by a rheumatologist. Without medication, they can develop flares, which can lead to functional impairment and disability. That means they cannot participate in school, work, or other aspects of their lives. We also suspect many of these patients end up accessing urgent care, emergency rooms, or walk-in clinics for spot treatment.

Evelyn: What we see downstream is poor disease control affecting schooling and work. Patients have to miss exams because they are flaring in their hands, or cannot get to school because of a flare in their knee, or cannot do a certain job. We have had patients who are dental hygienists or bricklayers with difficulty with manual dexterity. If there are jaw comorbidities, they may not be able to eat and nourish themselves properly. And then there is the mental health piece. If these areas are not addressed, the outcomes can be quite serious.

Some patients, not having access to prescribed medication, may turn to other substances to manage their pain, which brings its own complications. Poor disease control can also progressively reduce the mobility they need for their everyday lives. If these areas are not optimised, it creates trouble not just with their arthritis, but across the whole picture.

Gina: How does all of this impact clinicians and the services they work within?

Evelyn: We are also affected by losing a patient we have been caring for, sometimes for a short time, sometimes for many years. You really create a strong bond with someone when you diagnose them with a chronic condition and support them through it, and then you send them out. You want to trust that you have given them enough tools to succeed, and you want to know they are going somewhere you trust. If they are moving abroad and you do not know the receiving team well, that can be nerve-wracking. The best thing I can do is make them as autonomous as possible and equip them with those tools, but it is certainly a source of concern.

Natasha: If you were to ask adult rheumatologists about their frustrations with this population, frequent no-shows would come up immediately. In my clinic, and in our combined transition clinic, my rule is: if it is one of these patients, we keep rebooking them. My secretary sometimes asks, ‘Are you sure you want to rebook?’ And I say, yes — keep rebooking. If they do not show, I am not going to close off care to them.

Another challenge is the lack of resources. Many pediatric hospitals have well-resourced multidisciplinary teams, nurses, therapists, and other support. In adult care, providers are often more on their own, even within a hospital setting. And I think adult providers can also struggle with parental involvement.

In the adult world, we frequently have patients who bring a partner or a friend as a second set of ears, but when it comes to pediatric patients transitioning into adult care, the parent brings something different, they carry a very important historical knowledge of the disease. They were there when their child was sick and may have insights we would not otherwise have. I look at it from that perspective: they are an essential part of the patient’s medical history, and a resource, not a complication.

Gina: You touched on the challenges parents and caregivers face during this time as well. What do you see them going through when their children are moving between these two services?

Natasha: Initially, as Evelyn says, they can feel pushed aside, isolated, and not in charge. But the culture in our clinic is not to simply remove them. For the first few visits, as they are getting to know us, we do not ask the parents to leave. They need to develop trust in us too, it is their child. What we naturally see is that the parents come less and less over time. Transition, even though there is a hard stop in most countries at 18 or 17 in the UK, which also has an adolescent medicine sector, is not really about age readiness, it is about comfort readiness. So we allow the parent to be there and to gradually step back. We still give the young adult time with us alone in the clinic, so they can get used to speaking with us directly. But we do not remove the parent from the entire visit.

Evelyn: I would add that in our clinic, as our rapport with the parent grows, they naturally step back on their own. There is a real correlation there. If we have a good relationship with the parent, they feel comfortable loosening the reins and letting their child come alone. There is also a correlation with disease stability,  when things are going well, young adults tend to start coming on their own. We actually had a patient last week who had been coming alone for a long time, and then his mother came to the appointment. That immediately told me he was flaring.

Gina: When it comes to the transition process, and given that you both run a clinic focused on this, what does the ideal pathway look like to you?

Natasha: There are guidelines on this from around the world. The Canadian Rheumatology Association is in the process of releasing its own guidelines. Most of what exists is based on expert opinion and consensus, since we do not have a large body of randomised evidence, but most of it makes good sense.

First, transition should start early. You should begin talking with the patient and caregiver about this at around age 12 to 14, though obviously that is not always possible if they are in the middle of a flare. Patients, families, and providers should all be active participants in the process, and ideally, if you know who the adult provider will be, they should be looped in early. There should be good communication between the pediatric and adult provider. A multidisciplinary team, including a transition navigator, seems to be a successful model, we have seen this work well in other chronic conditions like diabetes and inflammatory bowel disease. Self-management skills need to be developed not just in the patient, but also in the caregiver. Education around the disease, why it is important to take medications, and health literacy are all essential. And we should always make time for a holistic review at each visit, asking about school, work, social life, recreational activities. That matters.

Gina: How long have you both been running your transition clinic?

Natasha: We started planning it in 2018, and we launched in July 2019.

Evelyn: Yes, that is right — which was about six to nine months before the pandemic.

Gina: Difficult timing. But I imagine you have had many successes. Could you share some of those, and perhaps a couple of challenges others might learn from?

Natasha: Our clinic is built on the transition principles I just described. Evelyn and I see all new patients together, so patients continue to benefit from a pediatric perspective while being gently launched into adult care with me. We are very fortunate to have a multidisciplinary team; an advanced practice therapist who runs clinics with us, and nursing, social work, and pharmacy support in the background when needed. We also maintain communication with the referring pediatric provider throughout the patient’s time in our clinic. That is really helpful for historical context that the patient or parent may not fully remember. And our pediatric colleagues appreciate it too, they want to know what happens to the young adults they followed for ten or fifteen years.

Our clinic does not only focus on the medical aspects of the disease. At every visit we also ask about education, work, hobbies, recreational habits, whether they are smoking or drinking. It is a holistic review. And one of the unexpected benefits that Evelyn and I have found is how much we have learned from each other. Even within a small subspecialty like rheumatology, there are real differences between how things are done on the pediatric and adult sides. That cross-learning has been remarkable, and we each take things back to our general clinics. I certainly did not anticipate that when we started.

Evelyn: In terms of challenges, we needed to build good pathways in the adult setting for the management of uveitis and TMJ, since adult care for those conditions is quite siloed. We identified specific providers near our hospital who are expert in these areas, and we set up appropriate imaging pathways for TMJ, which, as Natasha noted, is used for quite different purposes in adult rheumatology compared to pediatrics. We also set up systematic rebooking pathways, so we do not let patients fall through the cracks when they miss appointments. We have mechanisms in place to keep them in the diary.

It is also genuinely lovely that we are are able to, when a patient is flaring, to see them together. Even if figuring out the next step is a challenge, doing it collaboratively is a real strength of the model. I have learned a great deal from Natasha’s perspective on things like managing pregnancy in patients on disease-modifying medications, something we see much more of in this young adult population. And providing education to trainees, whether advanced practitioners, residents, or fellows, has been really rewarding.

Gina: Are there other transition models out there that you have looked to for inspiration?

Natasha: Definitely. When we were setting up our clinic, we looked across Canada first to understand what models existed. There are many different approaches. In Halifax, the adult provider comes to the pediatric clinic, meets the patient a few times in that familiar environment, and then the patient moves to adult care. In Toronto at SickKids, a similar approach happens in the subspecialty clinics, the adult provider comes to them. In Calgary, interestingly, the pediatric provider and the patient go to the adult centre together for the first appointment. We had not seen that model elsewhere in the country.

We model ourselves most closely on the transition clinic in Vancouver, British Columbia, where patients attend a separate shared-care clinic with both the pediatric and adult provider. We believe this best serves the population, and I understand it is also similar to UK models. I had the pleasure of meeting Janet McDonagh, one of the leading transition researchers in the UK, and her approach aligns closely with what we are doing. We have also been very fortunate that our hospital at Women’s College has mental health services we can offer our patients when we have concerns about their wellbeing.

All transition clinics ultimately hinge on good communication and thorough transition summaries to ensure patients launch successfully.

Gina: Where do you think the biggest gaps still remain? What are you still trying to achieve?

Natasha: Quite simply, we still do not know what a successful transition model looks like, because we have not measured it systematically. Most of the existing literature is based on expert and consensus opinion, and that is valuable, because the people doing this work understand the problems deeply. But we have not studied it in a systematic way. There is a growing movement to do that through registries and databases, and we have started our own in our clinic. We want to know whether what we are doing is making a difference, and how we should adapt to become more effective.

Evelyn: Collaboration also remains difficult because of how healthcare systems are designed. We need more accurate data on how many patients are actually flaring during this period, and we need to better understand when a patient is truly ready to transition out of our shared clinic to a solo adult practitioner. There are validated questionnaires and tools that help with this, but readiness is not really about age, it is about when they have developed the aptitude to manage their own health and advocate for themselves. And in today’s world, we also need to ensure that mental health is genuinely addressed alongside disease management, so that we can help them be the best version of themselves.

Gina: As we come to the end of today’s conversation, I would love to finish with a final reflection. Evelyn, is there one piece of advice you would give to any pediatric rheumatologist who wants to better prepare their patients for a safe transition to adult care?

Evelyn: Do not wait until the point of transition itself. Begin conversations early, ideally from age 12 to 14. Make sure your patient knows the name of their condition and their medications. Make sure they are supported with their mental health. And encourage them to take the leap. New situations are scary. But if you know who you are sending your patients to, and you have developed a good relationship with the adult provider, the message to your patient can be: we have got you. We have got your patient, and they will be safe.

Gina: And Natasha, what one piece of advice would you give to adult rheumatologists listening to this?

Natasha: The operating manual has to be different for these patients. They are not like your adult patients, and you are going to need to adjust. Up until their mid-20s, everything is different, even brain development and cognition are not fully established until then. So much of life, including identity, has not yet been settled. If you develop a chronic illness at age 50, when you already have a career, a family, established interests and a sense of self, it is very different from developing one at age 15, or even 21 or 22, when almost nothing is established yet. A chronic illness at that younger age is likely to touch every other area of life in a way that it simply does not when you are older. That does not mean it cannot deeply affect you later in life, but the impact is different when you already have a well-established identity. So I always tell my adult colleagues: you are going to have to approach these patients differently.

Gina: Before I let you go, I want to reflect on something. In conversations like this one, where we focus on achieving the best outcomes for our patients, we often find ourselves naturally talking about challenges. That is important, but sometimes we forget to acknowledge the positives. Evelyn, what can young people look forward to when they move from pediatric to adult care?

Evelyn: There really is so much to look forward to. For a start, there is no Finding Nemo or Frozen on the walls. All of a sudden, you feel like a grown-up in a beautiful adult clinic. Instead of being the oldest patient there, you are on the younger side, getting ready to start a new chapter, which is genuinely exciting. You gain much more autonomy over your own health. You will be ready for it, and if you are not yet, you will learn to be. You are graduating into a very important next stage of your life.

You also have time to build a long relationship with your next provider. If you stay in the same area, you could have that relationship for the rest of your life, which is a wonderful thing. And with time, you will develop your own strength. Lastly, this really is a golden age for treating arthritis. It is never a good time to have the condition, but if there is ever a time, it is now, because there are so many remarkable treatments available, and even more options on the adult side to help get you into remission and feeling the best you possibly can, so that you can go out and achieve everything you want to achieve.

Gina: That is a perfect note to end on. A huge thank you to you both for joining us today. It has been a real pleasure to share your expertise, hear about the challenges, and understand what works.

Note: This transcript has been edited by AI to improve flow and clarity.