Inclusion of stakeholders in the research priority setting is important to ensure patient-relevant research is produced. The aim of the study was to 1) conduct a systematic review to identify research priority setting activities in Juvenile Idiopathic Arthritis (JIA), and 2) compare research priorities identified by stakeholders in the review with those presented at recent pediatric rheumatology conferences. We conducted a systematic review of articles published on MEDLINE, Embase, PSYCINFO, and CINAHL between January 2010-May 2025. We included articles that identified stakeholder research priorities specifically for JIA, or included stakeholders that were predominantly JIA consumers. Data on the prioritization process were extracted using an appraisal checklist. The top five research priorities were collated into common topic areas and their ranking was examined according to each stakeholder group including patients, parents/carers and healthcare providers. Abstracts from conference proceedings for the European Pediatric Rheumatology Congress (PReS) (2023–2025) and the American College of Rheumatology (2023–2026) were examined and categorized into research priority groups. Of 127 studies identified, five studies examining broad research priorities for JIA were included. Priority topic areas identified were research into treatment and healthcare (30
Juvenile systemic sclerosis (jSSc) is an orphan multisystem autoimmune disease that can cause significant morbidity during childhood and can lead to significant worsening of quality of life. The pathophysiological features are identical with adult-onset systemic sclerosis (SSc), jSSc exhibits a distinct clinical phenotype characterized by a significantly higher prevalence of diffuse cutaneous involvement, frequent overlap syndromes, distinct autoantibody profiles, and different long-term survival trajectories. Historically, the evaluation of jSSc has relied heavily on the extrapolation of adult outcome measures, which fail to account for developmental physiology, somatic growth, and pediatric-specific feasibility constraints. This review provides a comprehensive overview of indicators of disease activity and severity which might be used in daily clinical practice and adapted as outcome measures in future clinical trials. It includes global outcome measures, organ-specific outcomes (including skin, pulmonary, cardiac, gastrointestinal, musculoskeletal, renal, and vascular involvement), patient-reported outcome measures (PROMs), and clinician-reported outcomes (ClinROs). The performance of adult indices within pediatric cohorts are evaluated, if applicable. Additionally, we analyze severity scores like the Juvenile Systemic Sclerosis Severity Score (J4S) alongside modern consensus metrics derived from the international Hamburg symposia. We emphasize the integration of pediatric-adapted clinical assessments, quantitative imaging, and patient and physician related outcomes. The development of outcome measure in jSSc requires a paradigm shift from static severity scores to dynamic, multi-dimensional indicators capable of differentiating reversible inflammatory activity from potential permanent damage accrual. Validating pediatric-specific thresholds for physiological and cutaneous change remains an urgent priority. Over the next decade, the integration of artificial intelligence (AI)-driven quantitative imaging, decentralized home-based digital health tools, and molecular biomarkers probably will gain an essential role to optimize clinical trial readiness and personalize therapeutic strategies for children with systemic sclerosis. Not applicable.
To develop evidence-based recommendations for diagnosis and treatment of children and adolescents with systemic juvenile idiopathic arthritis (sJIA), taking into consideration the socioeconomic status and availability of medications in African countries. A steering group composed of five PAFLAR members formulated questions in PICO format (Patient/Population, Intervention, Comparison, Outcome), conducted a systematic literature review, and identified experts in pediatric rheumatology throughout Africa. The Delphi method was used to reach consensus among the experts on the recommendations for diagnosis and treatment of sJIA patients. The online Delphi questionnaire was sent to the 22 experts selected by the steering committee, who were asked to vote for each statement and to provide their suggestions for modifications or rewording. A 100
There is a significant shortage of pediatric rheumatologists in the United States with only about 420 practicing providers and more than 300,000 children with rheumatologic conditions. This shortage is compounded by regional maldistribution with large geographic areas lacking pediatric rheumatology providers and by the increasing prevalence of autoimmune diseases. Medicaid was established in 1965 to provide coverage for low-income families, children, senior citizens and people with disabilities. About 50
Abstract Background Health-related quality of life (HRQoL) data provided by children with arthritis and their parents is critically important to enable co-design of care and shared decision making. However, there is significant heterogeneity in how HRQoL is captured, as both generic (EQ-5D-Y-5L) and disease-specific instruments (JAMAR) are available. This study aimed to examine the concordance of the JAMAR and EQ-5D-Y-5L questionnaires in childhood arthritis. Methods The international UCAN CAN-DU study prospectively enrolled consecutive children with arthritis across Canada and the Netherlands. This study included patients in whom corresponding JAMAR and EQ-5D-Y-5L questionnaires were completed on the same date by either the patients or their parents. The concordance of the questionnaire responses was measured by comparing the answers given to five specific JAMAR domains corresponding to the EQ-5D-Y-5L dimensions (anxiety/depression; mobility; pain/discomfort; self-care; usual activities). The impact of disease activity was assessed. Spearman’s correlation explored the association between global scales from the JAMAR and the EQ-5D-Y-5L. Results The study included 678 children with JIA; 63% were female; the median age at first questionnaire was 11.9 years (interquartile range: 6.2–15.1). Concordances between JAMAR and EQ-5D-Y-5L responses were found in 84% of the questions across all domains (84%, 82%, 85%, 87%, and 82% for anxiety/depression, mobility, pain/discomfort, self-care, and usual activities, respectively). In a state of inactive disease, generic and disease-specific instruments converged across all domains except for pain/discomfort. Comparison of global assessment scales revealed a high correlation between the EQ-5D-Y-5L and the JAMAR (Spearman’s correlation: R = -0.72, p < 0.001). Conclusions Patients and parents provided different responses to generic and disease-specific HRQoL instruments. The concordance was reduced in all domains except for pain/discomfort when children were experiencing high disease activity, highlighting the perceived conceptual differences and limitations of HRQoL instruments.
