Managing juvenile idiopathic arthritis from pediatric to adult care

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It is common to think that arthritis only affects older people however one in 1,000 Canadian children 15 years and younger live with juvenile idiopathic arthritis (JIA), a term that encompasses a number of chronic inflammatory joint diseases that start before the age 16.

JIA often first appears in the joints and surrounding tissues, and presents as joint pain, swelling, and stiffness. In some cases, it can affect other organs, such as the eyes, skin, lungs, heart or gastrointestinal tract. Researchers are unsure why kids develop JIA (idiopathic means unknown).

Dr. Elizabeth Stringer, photo submitted.

While there is no cure for JIA, an effective management strategy can help improve an individual’s functional ability and productivity in daily life.

“Children do not just outgrow JIA,” says Dr. Elizabeth Stringer, a pediatric rheumatologist at the IWK. “They need ongoing rheumatologic care throughout adolescence which includes into the transition/transfer process to adult care.”

That transition of care has been a big focus of the IWK Rheumatology Department for decades.

Lynne Broderick. Photo by Ryan Wilson, IWK

“We know in rheumatology over 50 percent of youth have failed to have a successful transfer for various reasons,” says rheumatology clinic nurse Lynne Broderick. “The key is to start early.”

The first step is for the team to identify those youth who are going to need rheumatological care for a good part, if not the rest of their life.

“Transition happens over years and extends into early adulthood as youth learn to navigate the system and feel comfortable managing their health,” says Transition Coordinator Jackie Pidduck. “And for youth who will need continued support in adult care, transition continues while the youth and family learn to navigate the system and find the mix of support and independence that is right for the young adult.”

Andrea Weagle, RN IWK Rheumatology Clinic and rheumatology clinic nurse Lynne Broderick. Photo by Ryan Wilson, IWK

“We want to set them up for success,” says Broderick. “They identify goals through the Readiness checklist and practice skills during clinic visits. As they progress, they can evaluate and discuss those goals, adjusting them to best suit their needs.”

Youth build skills at a rate that is comfortable to them. They practice registering at appointments, managing their prescriptions, and speaking about their care independently with healthcare providers.

Throughout the year the IWK clinic also has an adult care rheumatologist come and do visits with youth together with their pediatric rheumatologist. In effect it is like they are having their first full adult visit but are having it in the familiar setting of the IWK.

Jackie Pidduck, photo submitted.

“Our patient and caregiver partners often use their experiences with the rheumatology team as an example of the importance of talking about transition early, building the skills youth need over time and partnering with adult providers to support youth and families as they transfer to adult care,” says Pidduck.

Every transfer to adult health care is different and the IWK has prepared a Readiness Checklist for Youth  as well as other general resources for  Transition to Adult Health Care.

March is Juvenile idiopathic arthritis (JIA) Awareness Month in Canada.