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Using a collaborative learning health system approach to improve disease activity outcomes in children with juvenile
Julia G Harris1, Catherine A Bingham2, Sheetal S Vora3
1Department of Pediatrics, Children's Mercy Kansas City and University of Missouri-Kansas City School of Medicine, Kansas City, MO, United States.
Insights
The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) improved juvenile idiopathic arthritis (JIA) disease activity metrics, exceeding its 2023 goal. This learning health network achieved an 81% inactive or low disease activity rate in JIA patients.
Area of Science:
- Pediatric Rheumatology
- Learning Health Systems
- Autoimmune Diseases
Background:
- Juvenile idiopathic arthritis (JIA) is a chronic autoimmune condition impacting children, potentially causing joint and ocular inflammation.
- The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is dedicated to enhancing JIA patient outcomes.
- PR-COIN utilizes a shared patient registry to track quality and disease activity measures.
Purpose of the Study:
- To assess the effectiveness of the PR-COIN learning health network in improving disease activity in pediatric patients with JIA.
- To achieve a target of 80% of patients with oligoarticular or polyarticular JIA having inactive or low disease activity by the end of 2023.
Main Methods:
- PR-COIN involves 23 hospitals and over 7,200 JIA patients.
- Key outcome measures include active joint count, physician global assessment, and composite scores like the 10-joint clinical Juvenile Arthritis Disease Activity Score (cJADAS10).
- Network interventions included pre-visit planning, shared decision-making, and a Treat to Target approach.
Main Results:
- Significant improvements were observed across five disease activity outcome measures.
- The percentage of patients with inactive or low disease activity by cJADAS10 reached 81%, surpassing the network's goal.
- Clinical inactive disease by ACR criteria improved from 46% to 60%, with decreased mean cJADAS10 scores and active joint counts.
Conclusions:
- PR-COIN has demonstrated substantial improvements in disease activity metrics for children with JIA.
- The network will continue collaborative efforts to further enhance JIA patient outcomes, focusing on health equity and data quality.
Introduction:
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.
Methods:
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.
Results:
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.
Conclusions:
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.
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