medwireNews: Pain, disease activity level, active joint count, and morning stiffness reported by children with juvenile idiopathic arthritis (JIA) or by their parents are “valid and reliable tools for patient self-monitoring,” report researchers.
“The selected measures are ideally suited for remote assessment of disease course and could potentially be included in a patient/parent reported disease activity score for juvenile idiopathic arthritis,” say Alessandro Consolaro (University of Genova, Italy) and team in Arthritis Care & Research.
The four measures, all included in the Juvenile Arthritis Multidimensional Assessment Report (JAMAR), were selected based on their high ranking in the consensus process of the updated OMERACT JIA core domain set. And complete data were available for 8848 parents and 6204 patients with JIA who took part in the EPOCA study between 2011 and 2016.
The researchers tested the validity of the patient- and parent-reported measures according to their correlation with a composite disease activity score (cJADAS10), the erythrocyte sedimentation rate (ESR), and physician-reported measures, including the physician global assessment, number of joints with active arthritis, swollen joint count, tender joint count, and number of joints with limitation on motion.
They found that parent-reported disease activity, pain, and joint count had a “strong” correlation with the cJADAS10, while morning stiffness had a “moderate” correlation, with Spearman’s rank correlation coefficients of 0.73, 0.71, 0.69, and 0.53, respectively.
All of the parent-reported measures except for morning stiffness correlated moderately with the physician-reported measures of disease activity, with the exception of limited joint count, which had a poor correlation. And there was also a poor correlation between all four parent-reported measures and ESR.
The level of association between the parent-reported outcomes and the cJADAS10 remained consistent when patients were grouped by International League of Associations for Rheumatology category, geographic area, education level of the parent completing the questionnaire, and socioeconomic status.
The findings were similar for patient-reported measures, say Consolaro and co-investigators.
They also assessed the inter-rater reliability using paired data from 5947 visits in which parents and patients both completed evaluations, finding “almost perfect reproducibility” (intra-class correlation coefficient [ICC] ≥0.80) between the parents’ and patients’ ratings for all four measures.
Additionally, the test–retest reliability was also “almost perfect” for all but one of the measures when evaluated among the 442 parents and 344 patients who completed the questionnaire for a second time at 7–14 days after their first. The exception was parent-assessed disease activity, for which the reproducibility was still “substantial” (ICC=0.78).
The study authors therefore believe that these measures “are ideally suited to be included in a parent/patient reported disease activity score for remote monitoring of patients.”
And they conclude: “The integration of parent- and child-reported outcomes in clinical assessment may facilitate concordance with physician’s choices, improve adherence to treatment, and participation in a shared decision-making strategy in juvenile idiopathic arthritis.”
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