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.

Joint destruction can begin at any age, but it can take years for the damage to present itself in children, so the learning network helps ensure they get the best help possible.

With the patient’s consent, team members at each of PR-COIN's 12 sites collect all kinds of data from how many joints are affected, to pain levels, to the last time the patient had a laboratory test, or saw the ophthalmologist. Then, Dr. Morgan DeWitt’s team collects the data and makes charts that show, over time, how effectively the health care teams are performing in certain important areas of care. Once a month, the teams talk over the results via phone conferences.

Tracking patient data in such a manner helps teams develop ways to pull together everything needed to care for children with JIA, down to improving communication with eye doctors and primary care physicians. Sharing results matters, says Dr. Morgan DeWitt, because all network members are dedicated to improving care. When one site is doing well, that team helps others by sharing successful tactics. Discussing experience and what works is where the learning happens – both within individual sites and across the network.

"A lot of teams already have good practices in place but they may not always use them consistently,” says Dr. Morgan DeWitt. “By virtue of sharing this information that conversation happens, and you can learn from one another."

Now that PR-COIN is up and running at 12 sites, Dr. Morgan DeWitt hopes to expand the network to include additional centers. Her team is also working on a population management tool that will help rheumatologists monitor treatments for individual patients and see who is doing well, or find out which patients are not doing as well and may need a change in treatment. Also, as most chronic illnesses are managed at home, PR-COIN is eager to add online tools to support patients and caregivers and involve them in PR-COIN activities.

Just as caring for children with JIA needs a team of health care professionals, Dr. Morgan DeWitt relied on teamwork to pull PR-COIN together. The American College of Rheumatology provided support for the electronic database. Funding came from the Arthritis Foundation, the Cincinnati Children’s Hospital Medical Center via the Agency for Healthcare Research, which matched the Arthritis Foundation grant, and from an anonymous donor.

Dr. Morgan DeWitt credits the Arthritis Foundation with getting the funding, and thus the quality improvement  learning network off the ground. “The Arthritis Foundation took a risk on our project. It’s a compelling idea but this type of project is difficult to fund,“ she says. “They took a risk, and hopefully the Arthritis Foundation can say the investment paid off.“