Background/Purpose: Parent- and child-reported outcomes (PCROs) reflect the parent and child perception of rheumatic disease course and effectiveness of therapeutic interventions. Among PCROs for the assessment of patients with juvenile idiopathic arthritis (JIA), the most widely adopted is the parent/patient global evaluation or well-being visual analogue scale (WB-VAS). Several studies in JIA have highlighted the discrepancies in the assessment of the disease status between the physician and the parent/patient. This difference might be due to the WB-VAS measuring a broader construct than the physician global assessment (PGA). Aim of this study is to evaluate in a large multinational sample of JIA patients the disease characteristics of subjects with a PGA score of 0 and with an increased WB-VAS score.

Methods: Data from the multinational dataset of patients in the Epidemiology Treatment and Outcome of Childhood Arthritis study were analyzed. We have included only subjects with a PGA score of 0. PCROs were collected through the juvenile arthritis multidimensional assessment report. We compared demographic features, socio-economic status, level of education, subtype of JIA diagnosis and the main PCROs (pain level, presence of morning stiffness, count of joints with swelling or pain, functional ability, disease activity level, ongoing therapy, presence of medications side effects and health related quality of life between subjects with WB-VAS ≤ 1 and > 1.

Results: a total of 3537 patients were sorted into two groups according to the WB_VAS score: 2862 subjects were included in a first group (WB_VAS ≤1); 675 in a second one (WB-VAS >1). Respectively, 17,6% vs 18,1% of families belonged to the lower socio-economic status, 70,5% vs 71% to the intermediate, 11,9% vs 10,8% to the higher. The percentages of patients in the three levels of education was not different in the two groups:20,2% and 22% in the lower, 48,9% and 50,1% in the intermediate, 30,8% and 27,9% in the higher level of education. No significant difference was observed in the distribution of JIA categories in the two groups. Subjects in first group were younger at disease onset (5.6 vs 6.4 years). Comparison of main PCROs results is presented in the table.

Conclusion: we have analyzed the variables that might determine a difference between the physician’s assessment of inactive disease and the parent’s/patient’s perception of well-being. In particular, socio-economic status, level of education, and gender representation seem not to impact on the general perception of well-being, while pain seems to have the greatest influence on the parent/patient quality of life assessment. Finally, children with lower WB-VAS score had a younger disease onset.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/what-does-the-patient-well-being-vas-tell-us-when-the-physician-global-assessmentscore-is-zero-analysis-of-a-large-multinational-dataset/