Personalizing treatment plans for children living with arthritis

A doctor discusses treatment plan with parent and child

When a diagnosis of childhood arthritis is confirmed, several questions are considered by a pediatric rheumatologist, the child, their family and caregivers before treatment can begin. Included among them: how severe is the child’s disease likely to be? How likely is it that they’ll have the disease into adulthood? What’s the likelihood of their response to standard treatment? What’s the likelihood that they’ll experience side effects from treatment?

Answers to these questions are critical, but they aren’t always clear. Dr. Lori Tucker, Division Head, Division of Rheumatology, Department of Pediatrics at BC Children’s Hospital and Clinical Investigator at the BC Children’s Hospital Research Institute, proposes a solution.

The Personalized Estimates of Response and Severity Outcomes in Newly-diagnosed Juvenile Idiopathic Arthritis (PERSON-JIA) Trial is a nationwide effort led by Dr. Tucker to help pediatric rheumatologists and families land on the best treatment option for children with JIA. The most common type of arthritis in children and teens, JIA occurs when the body’s immune system attacks its own cells and tissues. Its cause is unknown, but its impact can be devastating.

Dr. Lori Tucker's headshotDr. Tucker is working with her BC Children’s Hospital Research Institute colleague Dr. Jaime Guzman and a team to produce a personalized report to help guide decision-making at the outset. This report is based on information previously collected from thousands of families impacted by JIA. Dr. Tucker says, “The idea is to be able to predict answers to these questions as soon as we see a child diagnosed with JIA.” The goal is better disease control, greater family engagement, improved satisfaction with care and more tailored treatments, she adds. 

Leveraging data to improve outcomes

Funded by Arthritis Society Canada, the PERSON-JIA Trial splits participating pediatric rheumatologists into two groups. In one, the standard of care offered to children and families continues unchanged. In the other, a report specific to the child informs key decisions. 

The report draws on personalized prediction algorithms to provide a suggested course of action. It’s a simple process. The rheumatologist enters information about the child’s situation into an application on their computer, tablet or smartphone. The application then uses data from a registry of thousands of children living with arthritis to recommend treatment based on the child’s circumstances. The Trial tests whether doctors who use the report to guide discussions on treatment choices see better treatment response in the patient than doctors who do not.

“The idea is to use the report to encourage shared decision-making between kids, families and the rheumatologist at their very first diagnostic visit. What we want to know is whether using the report helps get kids better faster and whether parents and kids value it,” says Dr. Tucker. 

In the best-case scenario, the researchers will find that the report improves parents’ learning of JIA and their understanding of their child’s likely outcome. Dr. Tucker says most parents are unaware that children can be diagnosed with arthritis. She hopes the report makes parents’ difficult decisions less stressful, and that by engaging parents early on, children can begin treatment sooner.

Addressing additional benefits, Dr. Tucker expands her scope: “Generating information through algorithms could be a better way to work. Harnessing data to produce information that we can use to improve how we provide care is potentially practice-transformational.”

There are 12 pediatric rheumatology centres across Canada currently enrolled in the Trial. Children under age 17 living with JIA are eligible for enrolment.

Close collaboration

Dr. Tucker has a tight relationship with the registry used to prepare the personalized reports. So, too, does Arthritis Society Canada.

When Dr. Tucker was Chair of the Canadian Alliance for Pediatric Rheumatology Investigators, the group decided a registry to house data on children with arthritis was needed. Details on medication prescribed and treatment outcomes would be included. The group approached Arthritis Society Canada for support to maintain the registry, which it received.

“That registry took a lot of work, but it’s a great thing to have. It has catalyzed a lot of important research,” Dr. Tucker says. “The PERSON-JIA Trial uses that data collection framework.”

Contemplating the future, Dr. Tucker turns the conversation to funding – or lack thereof. “There’s not a ton of researchers sitting around getting millions of dollars for pediatric rheumatology research. The only way research will get done for kids with arthritis is if I and my colleagues do it,” she says. “Pediatric rheumatologists across the country are super collaborative and amazingly hardworking. I wouldn’t be able to do any of my work without them.”  

Although she notes that JIA research and research into other childhood rheumatic diseases is grossly underfunded, she’s quick to express thanks for a partnership that has enabled, and continues to fuel, progress. 

“I’m really grateful to Arthritis Society Canada for the support they have given in the past and continue to give for pediatric rheumatology research and advocacy,” Dr. Tucker says. “It’s crucial.”