Background/Purpose: In the last years, the interest in the assessment of parent- and child-reported outcomes (PCROs) in paediatric rheumatic diseases is gaining increasing importance. These measures reflect the parent and child perception of the disease course and effectiveness of therapeutic interventions and may facilitate concordance with physician’s choices, improve treatment adherence, and participation in a shared decision -making strategy. Moreover, the availability of reliable PCROs could be crucial for remote monitoring of patients when in person clinical evaluation may be difficult or even not possible. Aim of this work is to provide further evidence of validity and reliability for four PCRO measures included in the OMERACT JIA core domain set: the evaluation of the child’s pain and of the child’s level of disease activity, the assessment of the morning stiffness (MS) duration, and an active joint count for parent/patient proxy or self-assessment.

Methods: Pain and disease activity were rated on a 21-numbered circle scale ranging from 0 (best result) to 10 (worst result). MS was measured with a 5-point Likert scale. The proxy- and self-assessment of active joints was obtained by rating the presence of pain or swelling in the following joints or joint groups: cervical spine, lumbo-sacral spine, shoulders, elbows, wrists, small hand joints, hips, knees, ankles, and small foot joints. To each joint or joint group, one point was given in case of monolateral involvement, two points in case of bilateral involvement. Patients were included in a multinational dataset of patients enrolled in the Epidemiology Treatment and Outcome of Childhood Arthritis study. Criterion validity was assessed by examining the correlation of the four tested measures with physician centered measures, ESR, and composite disease activity scores. Correlations of the measure with the cJADAS10 were also computed after grouping patients by ILAR category, by geographic area, and by education level. Reliability was assessed in a subset of subjects with Spearman correlations and intraclass correlation coefficients (ICC), comparing two visits 7-14 days apart.

Results: A total of 8,848 parents and 6,204 patients had all the evaluations available. Correlations of tested measures were moderate (0.4–0-7) with physician centered measures and poor (< 0.4) with ESR. The level of correlation of the tested parent measures with the cJADAS10 remained stable after grouping patients by ILAR category. In the same analysis with patients grouped in eight geographic areas, correlation levels were similar, although, on average, they were higher in Latin America and slightly lower in North America. The levels of correlation with the cJADAS10 were similar in subjects in which the level of education of the parent filling the questionnaire was elementary or lower, high school, or degree, respectively. In 442 parents and 344 children, correlations between first and second assessment was > 0.7 for all measures; ICC ranged between 0.79 and 0.87 for parents and 0.81 and 0.88 for children.

Conclusion: The four tested PCROs showed good criterion validity and excellent reliability. These tools can be considered for remote patient assessment, when in person evaluation might not be possible.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/validity-and-reliability-of-four-parent-patient-reported-outcome-measures-for-juvenile-idiopathic-arthritis/