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 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 was formed with the mission to improve dramatically, the outcomes of care for children with Juvenile Idiopathic Arthritis. PR- COIN received initial funding from a generous anonymous donor, the Arthritis Foundation, and a matching grant from the Center for Education and Research in Therapeutics (CERT) at Cincinnati Children’s Hospital Medical Center. The American College of Rheumatology (ACR) also supports PR-COIN through their 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 and supported in part by team membership fees, seven pediatric rheumatology centers volunteered to work with PR-COIN’s Coordinating Team to design, test, refine and pilot initial data collection tools and the electronic data entry system.
PR-COIN Launches as an Improvement Collaborative (2011)
Early member activities established pre-intervention baseline data and included training in performance improvement methodology. Teams share knowledge gained through regularly scheduled collaborative activities based upon the Institute for Healthcare Improvement’s Breakthrough Series approach.
As a Quality Improvement Network, we offer member teams many resources and opportunities for learning, interaction, and cooperation. PR-COIN members receive team-specific and collaborative-aggregate data updated monthly. Twice yearly meetings and monthly webinars provide education from experts about effective clinic processes, treatments, and best practices. Teams readily share details of their clinic processes, and all materials are available on PR-COIN's member only website. All teams receive initial and ongoing training in quality improvement techniques and are supported by individual team coaching, so that all can more effectively improve the delivery of care.
PR-COIN recognizes patients and their families as critical partners in care. We actively recruit and welcome input from patients and parents in designing network initiatives. Furthermore PR-COIN supports individual teams in building capability for engaging families, locally.
PR-COIN is growing and is a true collaborative. Teams seamlessly share data and details about their work, and support one another in improving care delivered to patients with JIA. Using quality improvement techniques to implement proven approaches and ideas learned from best performing PR-COIN teams, we have statistically improved the the assessment of laboratory results and physical functioning, and increased our counseling about medications.
Steering Committee and Support Team pragmatically prioritize, and then implement focused initiatives to support improved results; however PR-COIN teams are free to choose improvement initiatives of greatest value to them.
Parents profoundly contribute by attending convened improvement Learning Sessions and Monthly Action Period Webinars. PR-COIN's Parent Work Group meets regularly to provide input and family centered perspectives that make our work more beneficial to patients. Already parents have represented PR-COIN to local organizations and at national Arthritis Foundation events and they are enthusiastic supporters of patient enrollment having redesigned recruitment materials and the public website www.pr-coin.org
By analyzing data and better understanding the processes of care provision, PR-COIN is improving the care and outcomes for patients with JIA. We invite you to join us and become even better, together!