Objective The aim of this work was to provide evidence of validity and reliability for 4 parent/child–reported outcome measures included in the Outcome Measures in Rheumatology juvenile idiopathic arthritis core domain set: the evaluation of the child's pain and level of disease activity, the assessment of morning stiffness duration, and an active joint count for proxy/self‐assessment. Methods Patients were included in the multinational study Epidemiology Treatment and Outcome of Childhood Arthritis. Criterion validity was assessed by examining the correlation of the 4 tested measures with physician measures and the clinical Juvenile Arthritis Disease Activity Score in 10 joints (cJADAS10) in the whole sample and after grouping patients by International League of Associations for Rheumatology (ILAR) category, geographic area, and education level. Reliability was assessed comparing 2 visits 7–14 days apart with intraclass correlation coefficients (ICCs). Results A total of 8,643 parents and 6,060 patients had all the evaluations available. Correlations of tested measures were moderate (0.4–0.7) with physician‐reported measures. The level of correlation with the cJADAS10 remained stable after grouping patients by ILAR category, geographic areas, and level of education of the parent filling the questionnaire. In 442 parents and 344 children, ICCs ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children. Conclusion The 4 tested parent/child–reported outcomes showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in‐person evaluation might not be possible.
ObjectiveTo investigate the frequency in which the physician provides a global assessment of disease activity (PhGA) >0 and an active joint count (AJC)=0 in children with juvenile idiopathic arthritis (JIA) and search for determinants of divergence between the two measures.MethodsData were extracted from a multinational cross-sectional dataset of 9966 patients who had JIA by International League of Associations for Rheumatology criteria, were recruited between 2011 and 2016, and had both PhGA and AJC recorded by the caring paediatric rheumatologist at the study visit. Determinants of discordance between PhGA>0 and AJC=0 were searched for by multivariable logistic regression and dominance analyses.ResultsThe PhGA was scored >0 in 1647 (32.3%) of 5103 patients who had an AJC of 0. Independent associations with discordant assessment were identified for tender or restricted joint count >0, history of enthesitis, presence of active uveitis or systemic features, enthesitis-related or systemic arthritis, increased acute phase reactants, pain visual analogue scale (VAS)>0, and impaired physical or psychosocial well-being. In dominance analysis, tender joint count accounted for 35.43% of PhGA variance, followed by pain VAS>0 (17.72%), restricted joint count >0 (16.14%) and physical health score >0 (11.42%).ConclusionWe found that many paediatric rheumatologists did not mark a score of 0 for patients who they found not to have active joints. The presence of pain in joints not meeting the definition of active joint used in JIA was the main determinant of this phenomenon.
One of the most challenging and intriguing phenomena observed during the COVID‐19 pandemic has been the multisystem inflammatory syndrome in children (MIS‐C). Patients with this condition present with some clinical features similar to those of Kawasaki disease (KD) and display signs and symptoms that are uncommon or rarely occur in this disorder, such as gastrointestinal complaints and myocarditis, often leading to myocardial failure and shock. In addition, patients’ age is older than that of children with classic KD. Management is based on administering intravenous immunoglobulin, glucocorticoids, and anakinra in the most severe instances. It is still debated whether MIS‐C and KD are different illnesses or represent a disease continuum.
The Authors described the case of a 2-year-old child presenting with the typical clinical features of MIS-C finally diagnosed as Wiskott-Aldrich immunodeficiency.
Background: The assessment of disease activity plays a pivotal role in the management of children with juvenile idiopathic arthritis (JIA). Most recent recommendations require that parents' and children's perception is incorporated in the evaluation of the disease course and of effectiveness of therapeutic interventions. A new disease activity tool, named parent Juvenile Arthritis Disease Activity Score (parJADAS) and based only on parent-centered outcome measures, is currently under development (1). Objectives: To demonstrate, in a large multinational dataset of JIA patients, the discriminant ability of the parJADAS. Methods: The parJADAS includes 4 measures: 1) parent assessment of disease activity; 2) assessment of pain intensity; 3) proxy assessment of joint disease; 4) assessment of morning stiffness (MS). Disease activity and pain are assessed on a 21-numbered circle VAS (0 = best and 10 = worst). The active joint count is based on the count of any swollen or painful joint, irrespective of its type, up to a maximum of 10 joints. MS duration is assessed on a Likert scale, ranging from no MS (0 points) to > 2 hours of MS (10 points). Validation was conducted on a dataset of 8,656 children with JIA from 49 countries, enrolled in the study of Epidemiology, treatment and Outcome of Childhood Arthritis (2), who had all the variables included in the parJADAS available. Discriminant ability was evaluated by comparing parJADAS levels (median, [IQR]) among patients with inactive disease (ID), low disease activity (LDA), moderate disease activity (MDA), and high disease activity (HDA) according to the cJADAS10; patients in remission, continued activity, or flare according to the attending physician; patients whose parents were satisfied or not with current disease state. To assess the possible influence of the articular and extra-articular damage on the parJADAS, the levels of the score in patients with or without damage (Juvenile Arthritis Damage Index > 0) were compared. For this analysis, only subjects in inactive disease and with at least 2 years of disease course were considered (n = 2,423). Results: The levels of parJADAS in patients in ID, LDA, MDA, and HDA were 0.
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