Harris Julia G, Bingham Catherine A, Vora Sheetal S, Yildirim-Toruner Cagri, Batthish Michelle, Bullock Danielle R, Burnham Jon M, Fair Danielle C, Ferraro Kerry, Ganguli Suhas, Gilbert Mileka, Gottlieb Beth S, Halyabar Olha, Hazen Melissa M, Laxer Ronald M, Lee Tzielan C, Liu Alice, Lovell Daniel J, Mannion Melissa L, Oberle Edward J, Pan Nancy, Shishov Michael, Weiss Jennifer E, Morgan Esi M
Department of Pediatrics, Children's Mercy Kansas City and University of Missouri-Kansas City School of Medicine, Kansas City, MO, United States.
Department of Pediatrics, Penn State Children's Hospital and Penn State College of Medicine, Hershey, PA, United States.
Front Pediatr. 2024 Aug 2;12:1434074. doi: 10.3389/fped.2024.1434074. eCollection 2024.
The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a North American learning health network focused on improving outcomes of children with juvenile idiopathic arthritis (JIA). JIA is a chronic autoimmune disease that can lead to morbidity related to persistent joint and ocular inflammation. PR-COIN has a shared patient registry that tracks twenty quality measures including ten outcome measures of which six are related to disease activity. The network's global aim, set in 2021, was to increase the percent of patients with oligoarticular or polyarticular JIA that had an inactive or low disease activity state from 76% to 80% by the end of 2023.
Twenty-three hospitals participate in PR-COIN, with over 7,200 active patients with JIA. The disease activity outcome measures include active joint count, physician global assessment of disease activity, and measures related to validated composite disease activity scoring systems including inactive or low disease activity by the 10-joint clinical Juvenile Arthritis Disease Activity Score (cJADAS10), inactive or low disease activity by cJADAS10 at 6 months post-diagnosis, mean cJADAS10 score, and the American College of Rheumatology (ACR) provisional criteria for clinical inactive disease. Data is collated to measure network performance, which is displayed on run and control charts. Network-wide interventions have included pre-visit planning, shared decision making, self-management support, population health management, and utilizing a Treat to Target approach to care.
Five outcome measures related to disease activity have demonstrated significant improvement over time. The percent of patients with inactive or low disease activity by cJADAS10 surpassed our goal with current network performance at 81%. Clinical inactive disease by ACR provisional criteria improved from 46% to 60%. The mean cJADAS10 score decreased from 4.3 to 2.6, and the mean active joint count declined from 1.5 to 0.7. Mean physician global assessment of disease activity significantly improved from 1 to 0.6.
PR-COIN has shown significant improvement in disease activity metrics for patients with JIA. The network will continue to work on both site-specific and collaborative efforts to improve outcomes for children with JIA with attention to health equity, severity adjustment, and data quality.
儿科风湿病护理与结局改善网络（PR-COIN）是一个北美学习型健康网络，专注于改善青少年特发性关节炎（JIA）患儿的结局。JIA是一种慢性自身免疫性疾病，可导致与持续性关节和眼部炎症相关的发病情况。PR-COIN有一个共享的患者登记系统，可跟踪20项质量指标，其中包括10项结局指标，其中6项与疾病活动相关。该网络在2021年设定的总体目标是，到2023年底，将少关节型或多关节型JIA且疾病活动处于不活跃或低水平状态的患者比例从76%提高到80%。
23家医院参与了PR-COIN，有超过7200名活跃的JIA患者。疾病活动结局指标包括活跃关节计数、医生对疾病活动的整体评估，以及与经过验证的综合疾病活动评分系统相关的指标，包括根据10关节临床青少年关节炎疾病活动评分（cJADAS10）评估的不活跃或低疾病活动、诊断后6个月时cJADAS10评估的不活跃或低疾病活动、cJADAS10平均评分，以及美国风湿病学会（ACR）临床无活动疾病的临时标准。对数据进行整理以衡量网络绩效，并在运行图和控制图上显示。全网络的干预措施包括就诊前规划、共同决策、自我管理支持、人群健康管理，以及采用治疗达标方法进行护理。
五项与疾病活动相关的结局指标随时间推移有显著改善。根据cJADAS10评估，疾病活动处于不活跃或低水平的患者比例超过了我们的目标，当前网络绩效为81%。根据ACR临时标准，临床无活动疾病的比例从46%提高到了60%。cJADAS10平均评分从4.3降至2.6，活跃关节平均计数从1.5降至0.7。医生对疾病活动的整体平均评估从1显著改善至0.6。
PR-COIN在JIA患者的疾病活动指标方面有显著改善。该网络将继续开展针对特定地点和协作的工作，以改善JIA患儿的结局，同时关注健康公平、严重程度调整和数据质量。
