Juvenile idiopathic arthritis (JIA) encompasses a group of incurable conditions characterized by autoimmune inflammatory arthritis. JIA is one of the more common chronic health conditions of childhood, impacting about 1 in 1000 children. JIA is an important source of morbidity: it often persists into adulthood and may result in joint destruction, visual impairment due to uveitis, and permanent disability. JIA frequently requires chronic treatment with immunosuppressive medications including biologic therapeutics. However, there is significant variation in the treatment of patients with JIA which may result in some patients not achieving the best outcomes possible.
Since only small numbers of patients are seen at each individual center, a multicenter collaborative network is necessary to identify best practices in care through a population registry. Such a registry is designed to facilitate quality improvement initiatives at each practice. PR-COIN is designed to aggregate data from several pediatric rheumatology practices to systematically record and track how patients are being treated and to study patient outcomes to better understand which treatment approaches are optimal.
PR-COIN Formation and Pilot Phase
PR-COIN was formed with the mission of improving the outcomes of children with JIA. The PR–COIN Steering Committee is comprised of pediatric rheumatologists who performed preliminary work to determine the mission, aim, key drivers for improvement, and measures for the PR–COIN Collaborative (see PR-COIN Key Driver Diagram). The project was organized and has proceeded in communication with the leadership of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and the CARRA JIA disease specific research committee endorsed our project proposal. The PR-COIN Steering Committee also spearheaded grant application efforts which resulted in initial funding for the project from the Arthritis Foundation, with a matching grant from the Center for Education and Research in Therapeutics (CERT) at CCHMC, and a generous anonymous donation. Support from the American College of Rheumatology (ACR) was also sought, and the ACR Board of Directors approved PR-COIN data collection hosted by the Rheumatology Clinical Registry (RCR), which was designed to support quality improvement and maintenance of certification efforts of the general ACR membership. With this foundational work in place, pilot teams representing seven pediatric rheumatology centers volunteered to engage in the project and actively worked with the PR-COIN Coordinating Team from August - December 2010 to design, test, and refine the data collection tools and the electronic data collection system used for this collaborative.
PR-COIN Improvement Collaborative Phase
As of January 2011 PR-COIN member teams share knowledge gained through regularly scheduled collaborative activities based upon the Institute for Healthcare Improvement’s Breakthrough Series approach. Early activities include establishing pre-intervention baseline data while receiving training in performance improvement methodology prior to testing change strategies at individual team sites. Teams also convene during improvement Learning Sessions where they receive intensive training and coaching from content experts. Between Learning Sessions, teams submit data regarding their performance on a monthly basis. Feedback reports are provided on a monthly basis to enable teams to assess their progress.