Background/Purpose: Outcome assessment is essential to optimize care for patients with juvenile idiopathic arthritis (JIA). Although disease activity and patient-reported outcomes (PROs) are different measures, patients commonly report pain and suboptimal overall wellbeing with no active arthritis on exam. We also note the converse with patients denying pain or suboptimal wellbeing with active disease being noted on physical exam. Therefore, in order to ascertain this and determine appropriate future interventions, the objective of this study was to assess for concordance between disease activity outcomes and PROs in patients with non-systemic JIA.

Methods: Data was assessed from January to August 2024. Patients with systemic JIA were excluded. Disease activity outcomes include the 10-joint clinical Juvenile Arthritis Disease Activity Score (cJADAS10), active joint count, and physician global assessment of disease activity (PhGA) value (0-10; 0=no disease activity). PROs include the Childhood Health Assessment Questionnaire (CHAQ) (0-3; 0 is optimal), arthritis-related pain intensity score (0-10; no or mild pain ≤3), and patient/parent global assessment of overall wellbeing (PtGA) (0-10; low value if ≤2).

Results: Data from 584 patients across 1149 visits were analyzed. Active arthritis was present at 31.2% of visits with a mean joint count of 1.19 (Table 1). Mean cJADAS10 was 3.5 (range 1.15 [in patients with inactive arthritis and PhGA=0] to 8.53 [in patients with active arthritis]). Mean PhGA was 0.82, and this value increased to 2.43 for those with active arthritis. Mean PROs were all lower in those with inactive arthritis although ranges remained the same. For those with no active arthritis, 34.4% had functional limitations, 37.5% had pain, and 19.4% had a moderate-high PtGA (Table 2). Conversely, for those with active arthritis, 29.5% reported no pain, 37.5% reported a CHAQ of 0, and 22.8% reported PtGA of 0.

Conclusion: For a considerable percent of patients with JIA with inactive arthritis, there are reports of pain, functional limitations, and suboptimal overall wellbeing. Additionally, many patients with JIA and active arthritis report no pain and optimal wellbeing, which suggests that PROs may be misleading if taken in isolation and physical assessment of arthritis is still paramount to determine active disease. Limitations include not stratifying data by JIA subtype, disease duration, uveitis status, medication use, and/or other comorbidities such as chronic pain syndromes. Continued self-management support is imperative to address factors impacting patient wellbeing. Further studies are needed to determine why this discordance exists and to assess demographic and disease characteristics associated with the discordance between disease activity and PROs.

Table 1. Disease activity and patient-reported outcome values.

Table 2. Proportion of patients with disease activity and patient-reported outcome cut-offs based on the presence or absence of active arthritis.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/discordance-between-disease-activity-and-patient-reported-outcomes-in-patients-with-juvenile-idiopathic-arthritis/