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      Using a collaborative learning health system approach to improve disease activity outcomes in children with juvenile idiopathic arthritis in the Pediatric Rheumatology Care and Outcomes Improvement Network

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          Abstract

          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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          SQUIRE 2.0 (Standards for QUality Improvement Reporting Excellence): revised publication guidelines from a detailed consensus process

          Since the publication of Standards for QUality Improvement Reporting Excellence (SQUIRE 1.0) guidelines in 2008, the science of the field has advanced considerably. In this manuscript, we describe the development of SQUIRE 2.0 and its key components. We undertook the revision between 2012 and 2015 using (1) semistructured interviews and focus groups to evaluate SQUIRE 1.0 plus feedback from an international steering group, (2) two face-to-face consensus meetings to develop interim drafts and (3) pilot testing with authors and a public comment period. SQUIRE 2.0 emphasises the reporting of three key components of systematic efforts to improve the quality, value and safety of healthcare: the use of formal and informal theory in planning, implementing and evaluating improvement work; the context in which the work is done and the study of the intervention(s). SQUIRE 2.0 is intended for reporting the range of methods used to improve healthcare, recognising that they can be complex and multidimensional. It provides common ground to share these discoveries in the scholarly literature (http://www.squire-statement.org).
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            Evidence on the Chronic Care Model in the new millennium.

            Developed more than a decade ago, the Chronic Care Model (CCM) is a widely adopted approach to improving ambulatory care that has guided clinical quality initiatives in the United States and around the world. We examine the evidence of the CCM's effectiveness by reviewing articles published since 2000 that used one of five key CCM papers as a reference. Accumulated evidence appears to support the CCM as an integrated framework to guide practice redesign. Although work remains to be done in areas such as cost-effectiveness, these studies suggest that redesigning care using the CCM leads to improved patient care and better health outcomes.
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              Coproduction of healthcare service

              Efforts to ensure effective participation of patients in healthcare are called by many names—patient centredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than products; unlike goods, services are always ‘coproduced’. Failure to recognise this unique character of a service and its implications may limit our success in partnering with patients to improve health care. We trace a partial history of the coproduction concept, present a model of healthcare service coproduction and explore its application as a design principle in three healthcare service delivery innovations. We use the principle to examine the roles, relationships and aims of this interdependent work. We explore the principle's implications and challenges for health professional development, for service delivery system design and for understanding and measuring benefit in healthcare services.
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                Author and article information

                Contributors
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                Journal
                Front Pediatr
                Front Pediatr
                Front. Pediatr.
                Frontiers in Pediatrics
                Frontiers Media S.A.
                2296-2360
                02 August 2024
                2024
                : 12
                : 1434074
                Affiliations
                [ 1 ]Department of Pediatrics, Children’s Mercy Kansas City and University of Missouri-Kansas City School of Medicine , Kansas City, MO, United States
                [ 2 ]Department of Pediatrics, Penn State Children’s Hospital and Penn State College of Medicine , Hershey, PA, United States
                [ 3 ]Department of Pediatrics, Atrium Health Levine Children’s Hospital and Wake Forest School of Medicine , Charlotte, NC, United States
                [ 4 ]Department of Pediatrics, Texas Children’s Hospital and Baylor College of Medicine , Houston, TX, United States
                [ 5 ]Department of Pediatrics, McMaster Children’s Hospital and McMaster University , Hamilton, ON, Canada
                [ 6 ]Department of Pediatrics, University of Minnesota and M Health Fairview Masonic Children’s Hospital , Minneapolis, MN, United States
                [ 7 ]Department of Pediatrics, Children’s Hospital of Philadelphia , Philadelphia, PA, United States
                [ 8 ]Department of Pediatrics, Medical College of Wisconsin and Children’s Wisconsin , Milwaukee, WI, United States
                [ 9 ]Department of Pediatrics, Hackensack University Medical Center and Hackensack Meridian Health , Hackensack, NJ, United States
                [ 10 ]Department of Pediatrics, Medical University of South Carolina , Charleston, SC, United States
                [ 11 ]Department of Pediatrics, Cohen Children’s Medical Center and Northwell , New Hyde Park, NY, United States
                [ 12 ]Department of Pediatrics, Boston Children’s Hospital , Boston, MA, United States
                [ 13 ]Departments of Pediatrics and Medicine, The Hospital for Sick Children, St. Michael’s Hospital, and the University of Toronto , Toronto, ON, Canada
                [ 14 ]Department of Pediatrics, Stanford Medicine Children’s Health and Stanford University , Stanford, CA, United States
                [ 15 ]Seattle Children’s Research Institute , Seattle, WA, United States
                [ 16 ]Department of Pediatrics, Cincinnati Children’s Hospital Medical Center , Cincinnati, OH, United States
                [ 17 ]Department of Pediatrics, University of Alabama at Birmingham , Birmingham, AL, United States
                [ 18 ]Department of Pediatrics, Nationwide Children’s Hospital and The Ohio State University , Columbus, OH, United States
                [ 19 ]Department of Pediatrics, Hospital for Special Surgery and Weill Medical College of Cornell University , New York, NY, United States
                [ 20 ]Department of Pediatrics, Phoenix Children’s Hospital , Phoenix, AZ, United States
                [ 21 ]Department of Pediatrics, Seattle Children’s Hospital & University of Washington School of Medicine , Seattle, WA, United States
                Author notes

                Edited by: Jelena Vojinovic, University of Niš, Serbia

                Reviewed by: Roberta Naddei, Federico II University Hospital, Italy

                Angela Migowa, Aga Khan University Hospital, Kenya

                [* ] Correspondence: Julia G. Harris jgharris@ 123456cmh.edu
                Article
                10.3389/fped.2024.1434074
                11327817
                39156025
                b8955f7a-8c59-40d8-b71e-6adc15e6247c
                © 2024 Harris, Bingham, Vora, Yildirim-Toruner, Batthish, Bullock, Burnham, Fair, Ferraro, Ganguli, Gilbert, Gottlieb, Halyabar, Hazen, Laxer, Lee, Liu, Lovell, Mannion, Oberle, Pan, Shishov, Weiss and Morgan.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 17 May 2024
                : 18 July 2024
                Page count
                Figures: 4, Tables: 0, Equations: 0, References: 45, Pages: 12, Words: 0
                Funding
                Funded by: Arthritis Foundation, doi 10.13039/100000980;
                Award ID:  
                Funded by: Cincinnati Children's Research Foundation Place Outcomes Research Award
                Award ID:  
                Funded by: Agency for Healthcare Research and Quality, doi 10.13039/100000133;
                Award ID:  
                Funded by: Patient Centered Outcomes Research Institute
                Award ID:  
                Funded by: Pfizer Independent Grant for Learning and Change
                Award ID:  
                Funded by: Abby's Army
                Award ID:  
                Funded by: We Love You Connie Foundation
                Award ID:  
                The author(s) declare financial support was received for the research, authorship, and/or publication of this article.
                The authors declare that PR-COIN has received funding from participation fees paid by member institutions, Arthritis Foundation, Cincinnati Children's Research Foundation Place Outcomes Research Award, Agency for Healthcare Research and Quality, Patient Centered Outcomes Research Institute, Pfizer Independent Grant for Learning and Change, Abby's Army, and an anonymous private donor. Funding was provided by the We Love You Connie Foundation to help support QI work at The Hospital for Sick Children. The funders were not involved in the study design, collection, analysis, interpretation of data, the writing of this article, or the decision to submit it for publication.
                Categories
                Pediatrics
                Original Research
                Custom metadata
                Pediatric Rheumatology

                juvenile arthritis,quality improvement,outcome measures,pediatrics,rheumatology,registries,collaborative learning

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