Sometimes the best remedy for children with juvenile arthritis is a hefty dose of sharing. A new “learning network” of pediatric rheumatology clinical teams representing 12 centers in North America called the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) aims to make certain that all children with juvenile idiopathic arthritis (JIA) receive the best care possible, no matter where they receive that care. Learning networks are made up of multiple clinical sites and use data to improve child health outcomes through quality improvement projects. These networks involve collaborations among patients/families, clinicians, researchers and communities.
Esi M. Morgan DeWitt, MD, MSCE, a rheumatologist at Cincinnati Children’s Hospital Medical Center, helped start the network two years ago. Dr. Morgan DeWitt says that caring for children with JIA calls for a team approach – of doctors, nurses, right down to the person who schedules appointments.
About one in 1,000 children in the United States (children are considered those under the age of 16 years old) have juvenile idiopathic arthritis (JIA). The disease is defined as arthritis that lasts more than six weeks that cannot be explained.
After JIA takes hold, there’s no going back and there is no cure, only respite or remission from the disease that can last months or years. So doctors work to keep JIA in check with medication and a watchful eye.
“In the past, it was frustrating because there were not many treatment options. Now, the outlook is good for kids,” says Dr. Morgan DeWitt. “They can pretty much do anything they want to do if they are treated appropriately.”
Such treatment requires a lot of watching over. The medications needed to keep the disease in check are strong; they can make the liver – where medications are processed – work extra hard. Drugs called biologics – medications made from living cells or tissue – help calm the immune system, and thus slow joint damage, but this action puts children at risk of infections, including tuberculosis. JIA also brings the risk of an eye condition called uveitis, an inflammation in eye tissue that often happens without any symptoms and can result in permanent scars in the eye and even blindness.
That’s why, in addition to their rheumatologist, children with JIA need to see their ophthalmologist and have labs tests to check medication safety on a regular basis.
“Not all of this screening happens under the watchful eye of the rheumatologist,” says Nancy Griffin, BSN, a quality improvement consultant. Working with Griffin and many others (including doctors, nurses, data analysts, experts in informatics), Dr. Morgan DeWitt launched PR-COIN, using what’s called quality improvement science to help rheumatology clinics make changes to the process of care delivery to improve patient experience and outcomes.
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