Background/Purpose: Incorporation of parent-/child-reported outcomes in patient assessment is deemed increasingly important in the managment of children with juvenile idiopathic arthritis (JIA). Aim of the study is to develop and to validate parent-centered and child-centered versions of the Juvenile Arthritis Disease Activity Score (JADAS), named parJADAS and chiJADAS, respectively.

Methods: The parJADAS and chiJADAS include 4 measures: 1) parent/child assessment of disease activity; 2) assessment of pain intensity; 3) self/proxy assessment of joint disease; 4) assessment of morning stiffness (MS). Disease activity and pain are assessed on a 0-10 VAS. The active joint count is based on the count of any swollen or painful joint 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 602 children with JIA who underwent 1749 visits at study unit. To account for repeated measurements in a single patient, construct validity was assessed by calculating between-subject and within-subject correlations of parJADAS and chiJADAS with cJADAS, JADAS10, physician global assessment of disease activity, number of active joints, parent/child rating of well-being and ESR. Discriminant ability was evaluated by comparing score levels between patients with active or inactive disease according to current criteria, and between patients who were satisfied or not satisfied with disease outcome. Sensitivity to change was tested using standardized response mean (SRM) in 2 subsequent visits performed no more than 6 months apart. Internal consistency was assessed with Cronbach‘s alpha coefficient and inter-rater reliability was assessed using the intraclass correlation coefficient (ICC).

Results: Between-subject correlations of parJADAS and chiJADAS were high (>0.70) with JADAS10, cJADAS10, parent/child rating of overall well-being, and moderate (0.40-0.70) with the other measurements. Moreover, in the same subject, changes over time of the parJADAS and chiJADAS corresponded to changes in disease activity, as indicated by high within-subject correlations with JADAS10, cJADAS10, physician global assessment of disease activity, parent/child rating of overall well-being, and active joint count. Both parJADAS and chiJADAS discriminated well between inactive and active disease and between satisfied and not satisfied patients (p<0.001). The responsiveness to clinical change of parJADAS was good (SRM = 0.84). The internal consistency was satisfactory, with Cronbach‘s alpha >0.80 for both PARJADAS and CHIJADAS. The inter-rater reliability between the parJADAS and the chiJADAS measured at the same visit was high, with ICC 0.92 (95% CI 0.90-0.93).

Conclusion: The parJADAS and chiJADAS were found to be valid and reliable for assessment of disease activity in JIA and may therefore be suitable for use in clinical practice, observational studies, and therapeutic trials. Both scores may potentially surrogate physician assessments when these are not available.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-and-initial-validation-of-the-parent-and-child-versions-of-the-juvenile-arthritis-disease-activity-score/