Don’t Call Them ‘Guidelines’

Drs. Wallace, Beukelman and Kimura are quick to state that these consensus treatment plans are NOT guidelines. Guidelines are developed in very different and more formal way, relying solely on what’s been published in the medical journals.

The American College of Rheumatology (ACR) has guidelines for the treatment of JIA, but they are “incredibly general, not specific,” says Dr. Wallace.

That’s because there is no evidence yet, she adds. “What we are doing will inform the next iteration of those guidelines with evidence.”

The consensus treatment plans are called that “because they involved many pediatric rheumatologists in CARRA discussing, agreeing and coming to a consensus about how children with [arthritis] should be treated,” says Dr. Kimura.

The Consensus Process

Reaching consensus was no easy feat. CARRA has four disease-specific committees that participated in this effort: the JIA committee, the Juvenile Dermatomyositis (JDM) committee, the Systemic Lupus Erythematous (SLE) committee and the Scleroderma, Vasculitis and Rare Diseases (SVRD) committee. Each was tasked with developing a set of consensus treatment plans.

Once the groups chose which specific disease to focus on, the committees polled the 300+ CARRA members about their current treatment practices. The data were then compiled and served as the basis for discussion of committee members at the two-day, in-person 2010 CARRA meeting. In addition to the approximately 20 to 50 voting pediatric rheumatologist committee members, parents of children with JA and other lay members sat in on the discussions.

The in-person meetings involved a lot of discussion and compromise to establish three or four treatment plans that the members believed would be agreeable to all.

“We wanted the plans to be as well defined as possible so that they are easier to compare,” says Emily von Scheven, MD, chief, Division of Pediatric Rheumatology at the University of California, San Francisco, and chair of CARRA’s SLE committee. “But we wanted the treatment plans to look as close as possible to what people were doing out there so they’d be comfortable using them. And we wanted them to line up with the best available literature.”

A second survey was then employed to help hammer out any remaining issues. Once consensus was reached – 80 percent agreement within the committee – a final survey was sent to all CARRA members to determine if they would use the consensus treatment plans in their clinical practice.

In the end, each committee published their consensus treatment plans in Arthritis Care & Research in 2012. Each group of plans describes data to be collected, time points for data collection and corticosteroid taper plans. Data will be collected into the CARRA Registry. When sufficient numbers of patients have been treated with the treatment plans, comparisons between treatments will be made in terms of how quickly improvement and remission was achieved, how long it lasted and if patients experienced side effects from the medications. Following is a brief summary of each.

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