Achieving reliable patient reported outcomes collection to measure health care improvement in a learning health network: lessons from pediatric rheumatology care and outcomes improvement network.

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.

Intravenous Golimumab in Children With Polyarticular-Course Juvenile Idiopathic Arthritis: Long-Term Extension of an Open-Label Phase III Study.

Objective: To report pharmacokinetics (PK), immunogenicity, clinical effect, and safety of intravenous (IV) golimumab in children with active polyarticular-course juvenile idiopathic arthritis (pcJIA) who participated in A Study to Evaluate the Pharmacokinetics, Efficacy and Safety of Intravenous Golimumab in Pediatric Participants With Active Polyarticular Course Juvenile Idiopathic Arthritis Despite Methotrexate Therapy (GO-VIVA)'s open-label, long-term extension (LTE) through week 252.

Methods: GO-VIVA participants who continued IV golimumab (80 mg/m every 8 weeks) after week 52 were included. PK and safety were assessed through week 244 (last dose) and week 252, respectively, and clinical response through week 116.

Seeking abortion accompaniment: experiences and self-managed abortion preferences of hotline callers after abortion legalisation in Argentina.

Background: Until the legalisation of abortion in Argentina in 2021, the Socorristas en Red, a network of feminist collectives, provided support and information ('accompaniment') to people self-managing their abortion with medications. Following legalisation, the Socorristas continued accompanying people self-managing or accessing abortion through the healthcare system. We conducted a cross-sectional study to understand preferences, experiences and choices about abortion when contacting a Socorristas hotline after legalisation of abortion in Argentina.

Disparities in Postpartum Care Visits: The Dynamics of Parental Leave Duration and Postpartum Care Attendance.

Objectives: To understand differences in the relationship between parental leave duration and postpartum care across sociodemographic and income groups.

Methods: We used data from six states participating in the Center for Disease Control and Prevention's yearly PRAMS study from 2016 to 2019 with a total sample of 12,442 people. Bivariable analyses assessed demographics among those who took more or less parental leave and estimated the prevalence of not accessing postpartum care by demographics, stratified by leave length.

Nursing leaders' perceptions of the impact of the Strengths-Based Nursing and Healthcare Leadership program three months post training.

Background: Development of nursing leadership is necessary to ensure that nurse leaders of the future are well-equipped to tackle the challenges of a burdened healthcare system. In this context, the Strengths-Based Nursing and Healthcare Leadership program was delivered to 121 participants from 5 organizations in Canada in 2021 and 2022. To date, no study used a qualitative approach to explore nursing leaders' perceptions of a leadership Strengths-Based Nursing and Healthcare Leadership program three months post training.

Evaluation of the effectiveness of a Strengths-Based Nursing and Healthcare Leadership program aimed at building leadership capacity: A concurrent mixed-methods study.

Background: Targeted interventions have been found effective for developing leadership practices in nurses. However, to date, no leadership training program based on the Strengths-Based Nursing and Healthcare Leadership approach exists.

Objectives: Demonstrate the effectiveness of a Strengths-Based Nursing and Healthcare Leadership 6-month program designed for nurse and healthcare leaders on leadership capacity and psychological outcomes.

Defining patient perception of overall well-being and disease activity in the OMERACT Juvenile Idiopathic Arthritis (JIA) core domain set: A report from the JIA working group.

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.

Pediatric Rheumatology Care and Outcomes Improvement Network's Quality Measure Set to Improve Care of Children With Juvenile Idiopathic Arthritis.

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.

Longer Times to Delivery of Otolaryngology Care for Patients With Limited English Proficiency.

Objective: Limited English proficiency (LEP) is known to contribute to poorer health outcomes and delays in management. However, to our knowledge, no other studies have explored the impact of LEP on delays to care within otolaryngology. This study aims to investigate the relationship between LEP and the time to delivery of otolaryngology care.

Effectiveness of a New Clinical and Communication Curriculum for Medical Students: Result of a Double-Blinded Randomized Controlled Educational Trial.

Objectives: To improve 4 skills (communication, history-taking, past history-taking, and documentation) in medical students, we designed and pilot-tested a curriculum to teach a sample of Year 4 (Y4) students these skills and compared the clinical performance of these students with students not receiving the intervention.

Methods: The study focused on the new curriculum's effectiveness in enhancing students' performance of these skills. To minimize exposure across groups, participants were divided into intervention and control groups at random and placed in various classrooms.

Paediatric rheumatologists do not score the physician's global assessment of juvenile idiopathic arthritis disease activity in the same way.

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.

The safety of COVID-19 vaccination in immunocompromised children and young adults with immune-mediated inflammatory disease.

Aim: To assess safety of COVID-19 vaccination in paediatric patients with immune-mediated inflammatory disease (IMID).

Methods: Subjects of 5-21 years of age with IMID who received at least one COVID-19 vaccine completed electronic surveys after each vaccine to assess side effects within 1 week of vaccination, current medications and COVID-19 testing after vaccination. Charts were reviewed for COVID-19 polymerase chain reaction and IgG response to SARS-CoV-2 spike protein results and for disease flare during the study period.

Undergraduate Medical Education Reform in Viet Nam for a Primary Health Care Workforce.

Strong primary health care (PHC) systems require a robust PHC workforce. Traditionally, medical education takes place in academic medical centres that favour subspecialty care rather than PHC settings. This may undervalue primary care as a career and contribute to a shortage of PHC workers.

Sleep problems in autism: Sex differences in the school-age population.

Clinically significant sleep problems affect up to 86% of the autistic population in school-age. Sleep problems can have negative impacts on child cognition, behavior, and health. However, sex differences in the prevalence and types of sleep problems are not well understood in autism.

Predicting wildlife corridors for multiple species in an East African ungulate community.

Wildlife corridors are typically designed for single species, yet holistic conservation approaches require corridors suitable for multiple species. Modelling habitat linkages for wildlife is based on several modelling steps (each involving multiple choices), and in the case of multi-species corridors, an approach to optimize single species corridors to few or a single functional corridor for multiple species. To model robust corridors for multiple species and simultaneously evaluate the impact of methodological choices, we develop a multi-method approach to delineate corridors that effectively capture movement of multiple wildlife species, while limiting the area required.

Consensus Approach to a Treat-to-target Strategy in Juvenile Idiopathic Arthritis Care: Report From the 2020 PR-COIN Consensus Conference.

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.

Seroprevalence and clinical outcomes of SARS-CoV-2 in paediatric patients with rheumatic disease.

Objectives: Immunosuppressed paediatric patients with rheumatic disease (RD) may be at risk for severe or critical disease related to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. Data remain scarce on coronavirus disease 2019 (COVID-19) outcomes in paediatric RD patients. The aim of this study was to determine the seroprevalence of SARS-CoV-2 IgG and to describe COVID-19 outcomes in immunosuppressed paediatric RD patients.

Creating Empowering Conditions for Nurses with Workplace Autonomy and Agency: How Healthcare Leaders Could Be Guided by Strengths-Based Nursing and Healthcare Leadership (SBNH-L).

The COVID-19 pandemic had the unintended consequence of placing nurses in the spotlight because their knowledge and skills were in desperate need. While it will be years until we fully understand the impact that this pandemic has exacted on the nursing workforce, early studies have found that nurses have been traumatized by this event and many intend to leave the profession This seismic event only further exacerbated an already vulnerable and strained nursing workforce that pre-existed worldwide prior to COVID-19. The pandemic also highlighted the many challenges facing nursing leadership, in particular, how to create conditions to maintain and sustain a healthy nursing workforce.

Links between parent-reported measures of poor sleep and executive function in childhood autism and attention deficit hyperactivity disorder.

Objectives: This study sought to assess whether poor sleep is associated with aspects of executive function (EF) among children with autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), or typical development (TD), after adjusting for demographic variables, stimulant medications, intelligence, anxiety, inattention, and hyperactivity.

Design: Cross-sectional.

Setting: Children recruited through ongoing studies at the Kennedy Krieger Institute.

Why Tumor Genetic Heterogeneity May Require Rethinking Cancer Genesis and Treatment.

Tumor genetic heterogeneity, in which individual tumors contain both multiple variant cancer-associated and normal genes, has been widely reported, although its significance has yet to be fully understood. We propose a genetic heterogeneity-based selection-centric hypothesis in which genetic heterogeneity, caused by the temporary reduction of DNA repair efficiency, occurs very early in human development, resulting in a small minority of cells in normal tissues acquiring cancer-associated genes that remain dormant. Cancer develops when precancer cells are selected for by altered tissue microenvironments; similar scenarios occur with development of metastases and therapeutic resistance in established cancer.

Mentoring Across Differences.

Introduction: Effective mentoring can contribute to wellness and career growth and satisfaction. However, the same social forces and interpersonal dynamics affecting all relationships can compromise mentoring relationships. This is especially true when there are issues that are compounded by structural disadvantage due to racism, gender bias, social class, and other discriminatory factors.