Background/Purpose: Patient outcomes and experiences are key components in the measurement of overall health outcomes in JIA and can be measured by validated PROMs and PREMs questionnaires. There is little information in the published literature regarding the relationship between PROMs and PREMs and disease activity in JIA. The objective was to establish a registry for JIA patients in SA and to understand this relationship better.

Methods: JIA patients attending the Rheumatology clinic at Women’s and Children’s Hospital were invited to participate. After obtaining written informed consent, data regarding demographics, JIA subtype, disease onset, investigation results, complications, medications used and the clinical JIA Disease Activity Score (cJADAS) were documented. Patients/carers completed questionnaires at each clinic visit, namely the Childhood Health Assessment Questionnaire (CHAQ), the Quality of My Life (QoML) and the British Society for Paediatric and Adolescent Rheumatology (BSPAR) PROMs and PREMs Questionnaire. Descriptive statistics, linear regression, and logistic regression were used to analyze the data as appropriate.

Results: Eighty four of eighty seven patients were included (Three incident cases were excluded from this analysis), 65.5% were female. Oligoarticular (oligo) n=30, polyarticular (poly) n=50, systemic n=4. We have reported data from the initial study clinic visit. The median cJADAS of oligo patients was 0.37 (IQR 0.00-1.55) and for poly patients was 1.75 (IQR 0.09-4.15). The median quality of life (QoL) was 80.45 (IQR 72.95-92.68) for oligo and 75.15 (IQR 60.33-84.33) for poly JIA. Functional ability was excellent, with a median CHAQ score of 0 (IQR 0-0.41) for oligo and 0.13 (IQR 0-0.63) for poly patients. There were 66.7% of oligo patients had inactive disease (cJADAS≤1), whilst only 40.0% of poly patients had cJADAS≤1. Patients with higher cJADAS reported lower QoL (p< 0.0001) and health-related QoL (HRQoL, QoL affected by health or illness) (p< 0.0001). In subgroup analysis, these associations remained significant for oligo and poly JIA. There were statistically significant positive correlations between CHAQ score and cJADAS (p=0.0101 for oligo, p=0.008 for poly), and pain score and cJADAS (p< 0.0001 for oligo, p=0.0002 for poly). Preliminary analysis of PROMs for non-systemic JIA suggested that there was a significant association between patient-reported pain and disease activity (p< 0.0001). Moreover, poorer sleep was significantly associated with higher disease activity for oligo patients (p=0.0216). Poly patients with moderate disease activity more often reported fatigue (p=0.037), feeling worried/frustrated (p=0.0198) and interference with preferred activities (p=0.0282) than patients with inactive disease. Most participants were satisfied with the clinic environment during their hospital visits (Fully 88.1%, Mostly 8.3%), whereas 29.8% experienced a delay in being seen, and 32.0% of these patients felt the waiting time was unacceptable.

Conclusion: We have successfully commenced the development of a JIA registry in SA and have shown a direct relationship between disease activity and PROMs, e.g. QoL, HRQoL, CHAQ score and pain for non-systemic JIA patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/establishment-of-a-registry-for-juvenile-idiopathic-arthritis-jia-patients-in-south-australia-sa-focus-on-patient-reported-outcome-measures-proms-and-experiences-prems/