Publications by authors named "Esi Morgan"

Objectives: To develop consensus-based recommendations for physician's global assessment of disease activity (PhGA) scoring and to standardise definitions of disease activity.

Methods: An international task force of 34 members was assembled, and recommendations were developed in 3 phases: (1) 2 preliminary surveys of paediatric rheumatologists and a literature review; (2) 14 videoconference meetings, informed by multicriteria decision analysis and formal anonymous voting; and (3) a 2-day in-person consensus conference using structured nominal group technique discussions and formal voting. The threshold for achieving consensus was ≥78% of voting task force members.

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Introduction: Data from the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) registry suggests that reliable collection of patient-reported outcomes (PROs) varies across sites. The objective of this study was to better understand the practices of collecting PROs at PR-COIN sites.

Methods: A REDCap survey was sent to the lead representative for each PR-COIN site.

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Article Synopsis
  • * Current treatment decisions often rely on general clinical trial data or insurance policies, rather than considering the individual characteristics of the patient and the unique effects of treatments.
  • * A proposed solution is to use digital health technology to create a tool that incorporates real-world patient data, enabling personalized treatment decisions through shared discussions between families and rheumatologists.
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  • The Physician Global Assessment (PhGA) is commonly used by pediatric rheumatologists to evaluate disease activity in juvenile idiopathic arthritis (JIA), but lacks a standardized scoring method.
  • A survey conducted among members of pediatric rheumatology organizations identified which factors influence scoring, focusing on non-systemic (nsJIA) and systemic JIA (sJIA), as well as considering extra-articular manifestations and imaging.
  • Results from 276 participants across 54 countries highlighted key factors for scoring, showing strong agreement on including certain extra-articular manifestations, while also indicating some variability and need for consensus in PhGA scoring practices.
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Background: Rituximab is associated with high infection rates, but studies of infections following rituximab in youth with childhood-onset SLE (cSLE) are limited. We conducted a retrospective longitudinal cohort study to assess the incidence of hospitalised infections following rituximab among children with cSLE and to assess changes in hospital-based rituximab administration over time.

Methods: Youth ages 2-21 years with an International Classification of Diseases (ICD) code for SLE who received rituximab during admission to a Pediatric Health Information System hospital from 2009 to 2021 were included.

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Article Synopsis
  • The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) aims to enhance the health outcomes of children with juvenile idiopathic arthritis (JIA) through a shared patient registry and a focus on disease activity measures.
  • With participation from 23 hospitals and over 7,200 patients, PR-COIN tracks various quality measures to assess and improve treatment effectiveness.
  • Significant improvements have been noted, including an increase in patients achieving inactive or low disease activity from 76% to 81%, along with a decrease in the average disease activity score, indicating better overall patient outcomes.
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Introduction: Ensuring high-quality race and ethnicity data within the electronic health record (EHR) and across linked systems, such as patient registries, is necessary to achieving the goal of inclusion of racial and ethnic minorities in scientific research and detecting disparities associated with race and ethnicity. The project goal was to improve race and ethnicity data completion within the Pediatric Rheumatology Care Outcomes Improvement Network and assess impact of improved data completion on conclusions drawn from the registry.

Methods: This is a mixed-methods quality improvement study that consisted of five parts, as follows: (1) Identifying baseline missing race and ethnicity data, (2) Surveying current collection and entry, (3) Completing data through audit and feedback cycles, (4) Assessing the impact on outcome measures, and (5) Conducting participant interviews and thematic analysis.

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Objective: We aimed to determine the frequency and types of infections in hospitalized children with childhood-onset systemic lupus erythematosus (cSLE), and to identify risk factors for intensive care unit (ICU) admission and mortality.

Methods: We conducted a retrospective study of youth aged 2 to 21 years using International Classification of Diseases (ICD) codes for SLE assigned during admission to a hospital participating in the Pediatric Health Information System, a database of United States children's hospitals, from 2009 to 2021. Generalized linear mixed effects models were used to identify risk factors for ICU admission and mortality among children hospitalized with infection.

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Objective: To gain consensus on the definitions and descriptions of the domains of the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials evaluating shared decision making (SDM) interventions.

Methods: Following the OMERACT Handbook methods, our Working Group (WG), comprised of 90 members, including 17 patient research partners (PRPs) and 73 clinicians and researchers, had six virtual meetings in addition to email exchanges to develop draft definitions and descriptions. The WG then conducted an international survey of its members to gain consensus on the definitions and descriptions.

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Objectives: Shared decision making (SDM) is a central tenet in rheumatic and musculoskeletal care. The lack of standardization regarding SDM instruments and outcomes in clinical trials threatens the comparative effectiveness of interventions. The Outcome Measures in Rheumatology (OMERACT) SDM Working Group is developing a Core Outcome Set for trials of SDM interventions in rheumatology and musculoskeletal health.

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Objective: The OMERACT Juvenile Idiopathic Arthritis (JIA) Working Group (WG) aimed to reach agreement on a consensus-based definition and description of the core domain related to patient perception of overall well-being and disease activity.

Methods: A committee of patient research partners, clinicians, methodologists, and researchers drafted working definitions and descriptions. The WG conducted two iterative electronic stakeholder surveys to obtain consensus on domain description, definition, and the distinction between patient perception of overall well-being and disease activity.

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Background: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal.

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Objective: To describe the selection, development, and implementation of quality measures (QMs) for juvenile idiopathic arthritis (JIA) by the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), a multihospital learning health network using quality improvement methods and leveraging QMs to drive improved outcomes across a JIA population since 2011.

Methods: An American College of Rheumatology-endorsed multistakeholder process previously selected initial process QMs. Clinicians in PR-COIN and parents of children with JIA collaboratively selected outcome QMs.

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Objectives: To assess the heterogeneity in factors affecting physician's global assessment of disease activity (PhGA) and in PhGA scoring of multiple JIA patient's case scenarios.

Methods: An electronic web-based questionnaire of factors potentially considered in PhGA was sent worldwide to members of PRINTO and the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). The respondents were asked to rate from 0 to 100 the relevance of 17 factors possibly affecting PhGA scoring and to derive a PhGA score of 17 detailed JIA patient cases.

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Pain is a common problem among children, particularly those with pediatric chronic diseases. Multifaceted assessment of pain can improve communication about pain and help clinicians characterize, differentiate, and treat a patient's unique experience of pain. Pain quality is an important domain of pain, describing the subjective sensory experiences associated with pain as well as the affective experiences of pain.

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Article Synopsis
  • The translation of research findings into clinical practice in pediatric rheumatology is complicated due to limited evidence, few trials, and the rarity of conditions.
  • Implementation science methodologies can help bridge the gap between research and practice, as demonstrated in other clinical fields.
  • This paper outlines key points from a retreat aimed at creating an Implementation Science Roadmap, focusing on curiosity, research integration, and patient-centeredness, with six actionable steps for effective application in pediatric rheumatology.
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Objective: Treat to target (T2T) is a strategy of adjusting treatment until a target is reached. An international task force recommended T2T for juvenile idiopathic arthritis (JIA) treatment. Implementing T2T in a standard and reliable way in clinical practice requires agreement on critical elements of (1) target setting, (2) T2T strategy, (3) identifying barriers to implementation, and (4) patient eligibility.

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  • The study aimed to compare the effectiveness and duration of TNF inhibitors (TNFi) vs non-TNF inhibitors in newly diagnosed Juvenile Idiopathic Arthritis (JIA) patients who started biologic treatments.
  • Data was collected from medical records of JIA patients between 2009 and 2018, finding that 92% started with TNFi, primarily etanercept, and those on TNFi showed better disease activity reduction than non-TNF users.
  • The results indicated that TNFi had a longer median persistence (395 days) compared to non-TNFi (320 days) and significantly greater improvements in juvenile disease activity scores at the 6-month mark.
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Objective: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions.

Methods: The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception.

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Healthcare providers were rapidly forced to modify the way they practiced medicine during the coronavirus disease 2019 (COVID-19) pandemic. Many providers transitioned from seeing their patients in person to virtually using telemedicine platforms with limited training and experience using this medium. In pediatric rheumatology, this was further complicated as musculoskeletal exams typically require hands-on assessment of patients.

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  • The study aimed to analyze how initial prescriptions and timing for starting biologic treatments (bDMARDs) vary in children newly diagnosed with non-systemic juvenile idiopathic arthritis (JIA).
  • Utilizing electronic medical records from a Midwestern pediatric hospital over nine years, researchers looked at prescriptions within three months of diagnosis and identified factors influencing the timing of bDMARD therapy.
  • Results showed an increased use of conventional synthetic drugs from 2009 to 2018, with more patients starting bDMARDs like adalimumab, and certain types of JIA and clinical factors leading to earlier treatments.
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Background: Mental health disorders are common in youth with rheumatological disease yet optimal intervention strategies are understudied in this population. We examined patient and parent perspectives on mental health intervention for youth with rheumatological disease.

Methods: We conducted a mixed methods cross-sectional study, via anonymous online survey, developed by researchers together with patient/parent partners, to quantitatively and qualitatively examine youth experiences with mental health services and resources in North America.

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