What’s important to consider when you’re moving from pediatric to adult care for arthritis?

When you’re a young person living with arthritis, your late teens and early twenties can be challenging. While learning to move through the adult world, you may sometimes need a hand when it comes to managing medication, medical appointments, school, work, relationships and mental health. In a number of Canadian cities, health care providers recognize this need and have formed transition clinics or programs (sometimes called Young Adult Rheumatic Disease or YARD programs), designed to help ease the shift from pediatric to adult care.

The various clinics have different models and may be designed to serve clients with a specific condition, such as rheumatoid arthritis or lupus. flourish spoke with rheumatologist Dr. Natasha Gakhal and Arthritis Society physiotherapist Danielle McCormack, who, together with pediatric rheumatologist Dr. Evelyn Rozenblyum, co-lead a transition clinic at Women’s College Hospital in Toronto for young people living with juvenile idiopathic arthritis (JIA). At their clinic, they jointly see clients between the ages of 17 and 25. After turning 26, clients move to solely seeing an adult healthcare provider. Dr. Gakhal notes that their clients, “have some unique challenges—medically, socially, education-wise, vocation-wise.” And while some young adult clients come to clinic appointments on their own, many come with their parents. “It’s a transition for parents as well,” she notes. Let’s take a closer look at some of the particular challenges faced by youth transitioning from pediatric to adult care.

Navigating big life changes

Moving away from home, entering a post-secondary or apprenticeship program, or starting employment can all be significant milestones for young adults. McCormack points out that aspects of a person’s social life, which could include smoking, alcohol and recreational drugs, is one consideration that comes up.  In addition to the regular health concerns these can cause, for people with arthritis, these activities can have possible effects on joints function and medication adherence. Understanding barriers to taking medication is another key point. McCormack says she became interested in forming a transition clinic because she saw a 27-year-old living with JIA who needed a hip replacement. “When she turned 18, she left [pediatric care] and she didn’t want to be on medication anymore, and she didn’t have all the counseling and all the education to understand the importance of medication and the risk [she was taking]. Her disease progressed to the point of a joint replacement. That could have possibly been prevented.”

Dr. Gakhal agrees that continuity of care can be an issue. In her adult practice, she often sees adults with significant damage to their hands who have a history of JIA in their younger years but haven’t seen a rheumatologist in a long time. “You have periods where you feel well, and periods where you feel bad, and they just rode it out. And now they show up in their thirties and forties, and I ask them ‘Why did  you decide to come now and not 10 years ago?’” A common response is that they’re getting older and are now starting to pay more attention to their health. Taking proactive measures during their teens and twenties to manage their arthritis could have headed off serious problems in their later adulthood.

Understanding accommodations

In addition to helping clients find the right balance of medication, physiotherapy and joint protection techniques, the clinic can direct young adults to resources. “We ask, ‘Are you doing okay at school? The number of [youth] that have no idea that they can actually access resources for accommodation at school… it was quite shocking to me,” says Dr. Gakhal. “There’s a whole subset of patients that have no idea that, if I had a flare of my joint pain, I could get permission to delay my test.”

Accessing mental health support

Living with a chronic disease like arthritis can take a toll on mental health as well. “[Young adults] don’t want their friends to know they have pain. They don’t want their friends to know it’s hard to do something. It’s really hard socially, I think, for them to admit to some mental health [challenges],” says McCormack. “For us, it’s really important to address that in clinic and try to help them find out where they could have the best support.”

Bridging provider knowledge gaps

Sometimes, the adult rheumatologist needs more information to provide good care to the young adult arthritis patient. “What I've learned through this clinic is actually, no, we [adult rheumatologists] don’t actually have as good of an understanding as we think we do…and that was one of the reasons why we started the clinic, because we knew that there was not just a gap for patients, but a gap for providers,” says Dr. Gakhal. She says, for example, there are some particular challenges to JIA, such as jaw involvement and eye involvement, that aren’t seen as frequently in the adult onset of  arthritis, and the health system doesn’t necessarily have good processes in place for dealing with these issues as patients go on to adult care.

Getting the support you need

Transitioning to adult care can be difficult, but there are resources to support you.  Ask your pediatric rheumatologist to learn about any transition clinics in your area, visit the section on “Looking Ahead” in the JIA Learning Hub from Sick Kids Hospital, or visit the Arthritis Society’s website to learn more about managing your arthritis.

Research: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6037274/
https://link.springer.com/article/10.1007/s11926-019-0855-4

You can learn more about the care options in your region with our Access to Primary Care navigation guide.

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