1298: Pediatric Rheumatology Care and Outcomes Improvement Network Demonstrates Outcome Improvement for Children with Juvenile Idiopathic Arthritis

Catherine Bingham¹, Julia Harris², Sheetal Vora³, Mileka Gilbert⁴, Cagri Yildirim-Toruner⁵, Kerry Ferraro⁶, Tingting Qiu⁷, Jon Burnham⁸, Michelle Batthish⁹, Beth Gottlieb¹⁰, Daniel Lovell⁷, Ronald Laxer¹¹, Tzielan Lee¹², Danielle Bullock¹³, Charles H Spencer¹⁴, Jennifer Weiss¹⁵, Melissa Hazen¹⁶, Edward Oberle¹⁷, Melissa Mannion¹⁸, Nancy Pan¹⁹, Michael Shishov²⁰, Danielle Fair²¹, Mary Toth²², Kendra Wiegand⁷ and Esi Morgan²³, ¹Penn State Children's Hospital, Hershey, PA, ²Children's Mercy Kansas City, Overland Park, KS, ³Atrium Health Levine Children's, Charlotte, NC, ⁴Medical University of South Carolina, Charleston, SC, ⁵Texas Children's Hospital/ Baylor College of Medicine, Houston, TX, ⁶Pediatric Rheumatology Care and Outcomes Improvement Network, Philadelphia, ⁷Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁸Children's Hospital of Philadelphia, Philadelphia, PA, ⁹McMaster University, Hamilton, ON, Canada, ¹⁰Cohen Children's Medical Center, Lake Success, NY, ¹¹Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ¹²Stanford University School of Medicine, Palo Alto, CA, ¹³University of Minnesota, Minneapolis, MN, ¹⁴Division of Rheumatology, Nationwide Children’s Hospital and Department of Pediatrics, The Ohio State University, Columbus, MS, ¹⁵Hackensack University Medical Center, Hackensack, NJ, ¹⁶Boston Children's Hospital, Boston, MA, ¹⁷Division of Rheumatology, Nationwide Children's Hospital and Department of Pediatrics, The Ohio State University, Columbus, OH, ¹⁸University of Alabama at Birmingham, Birmingham, AL, ¹⁹Hospital for Special Surgery, New York, NY, ²⁰Phoenix Children's Hospital, Phoenix, AZ, ²¹Medical College of Wisconsin/Children's Wisconsin, Wauwatosa, WI, ²²Nemours Foundation, Orlando, FL, ²³Seattle Children's Hospital, Seattle, WA

Background/Purpose: Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a Learning Health Network designed to improve outcomes of care for children with juvenile idiopathic arthritis (JIA). Currently, 23 pediatric rheumatology centers in North America participate, and a subset are currently entering data into a network Registry with a goal to report performance on process and outcome quality measures (QMs) to drive improved outcomes.

Methods: PR-COIN centers learn and use established quality improvement (QI) methodology to conduct improvement work. Since 2011, participating sites have entered data from JIA clinical encounters into a shared Registry. Performance on QMs is reported on statistical process control charts for both site-specific and aggregate data to identify significant change in performance, or special cause variation. Disease specific outcome measures include the clinical Juvenile Arthritis Disease Activity Score (cJADAS10), clinically inactive disease (CID), active joint count (AJC), and the time to inactive disease or low disease activity (LDA). Patient-reported outcomes measures (PROMs) include optimal physical function, low or no pain as defined as arthritis pain score < /=3, and patient global assessment of overall well-being (PtGA).

Results: Recent PR-COIN performance data includes 2043 children with JIA, and a total of >8200 children with JIA have been enrolled in the PR-COIN Registry since 2011. Disease activity outcomes have improved over time including mean AJC, mean cJADAS10, percent of patients with oligoarticular or polyarticular JIA who have inactive disease or LDA by cJADAS10, and percent of patients with CID (excluding inflammatory markers) (Figure 1). PROMs have also improved including mean PtGA, percent of patients with PtGA < /= 2, percent of patients with optimal physical function, and percent of patients with low or no pain (Figure 2). Figure 3 illustrates the control chart showing improvement in percentage of patients with PtGA < /=2 from 67% to 75%. Recent data reflects approximately 37% of the patients enrolled in the PR-COIN Registry and currently receiving pediatric rheumatology care at PR-COIN sites.

Conclusion: PR-COIN, a multi-center learning network implementing QI science that utilizes a shared Registry to report QMs and identify best practices, has demonstrated success in improving outcomes for children with JIA. Ongoing analysis of outcome performance will continue as more patients are included in the Registry. Data quality efforts are underway to ensure complete and representative data.
Figure 1: Y axis represents mean score (disease activity by cJADAS10 and AJC) and percent of patients who achieve the measure (inactive or LDA, and Clinical Inactive Disease).

Figure 2: Y axis represents mean PtGA score and percent of patients who achieve the measure (optimal physical function, no or mild pain, and PtGA

Figure 3: Blue dotted line=PR-COIN aggregate performance; Black dotted line=mean; Red dotted lines=control limits (+/-3 standard error of mean)
Disclosures: C. Bingham, None; J. Harris, None; S. Vora, None; M. Gilbert, None; C. Yildirim-Toruner, None; K. Ferraro, None; T. Qiu, None; J. Burnham, None; M. Batthish, None; B. Gottlieb, None; D. Lovell, AstraZeneca, Boehringer-Ingelheim, GlaxoSmithKlein(GSK), Novartis, UCB, Bristol-Myers Squibb(BMS), Pfizer, Janssen, NIH/NIAMS, NIH/NICHD, Roche; R. Laxer, Eli Lilly, Novartis, sanofi, sobi; T. Lee, None; D. Bullock, None; C. Spencer, None; J. Weiss, None; M. Hazen, None; E. Oberle, None; M. Mannion, None; N. Pan, None; M. Shishov, None; D. Fair, None; M. Toth, None; K. Wiegand, None; E. Morgan, None.