Background/Purpose: Information regarding longer-term outcomes in JIA largely pre-date the introduction of biologic therapies and have been cross-sectional. The aim of this analysis was to assess physician and parent-reported outcomes over the first 5 years following initial presentation to paediatric rheumatology in young people diagnosed with JIA since 2001.

Methods: Young people with JIA of any disease subtype were selected if enrolled in the Childhood Arthritis Prospective Study (CAPS), a UK multicentre inception cohort, between October 2001 and January 2011. The following outcomes were assessed annually to five years and included in this analysis: Active joint count, limited joint count, physician’s global assessment (10cm visual analogue score (VAS)), parental global evaluation (10cm VAS), pain (10cm VAS), functional ability (Childhood Health Assessment Questionnaire (CHAQ) and psychosocial health (psychosocial scale on the Child Health Questionnaire (CHQ)).

Outcomes were assessed descriptively over time and differences between subtypes were assessed by applying multilevel (patient-level) zero-inflated negative binomial (CHAQ) and linear (all other outcomes) regression analyses, adjusting for age and disease duration at presentation, gender and hospital.

Results: Of 1087 young people, 67% were female and median age at initial presentation to paediatric rheumatology was 8 years (IQR 3, 12). The most common disease subtype was oligoarthritis (52%) and least common RF-positive polyarticular JIA (4%). Eighty four percent had ever been treated with NSAIDs, 74% corticosteroids, 55% with DMARDs and 21% with biologics within follow-up.

In the entire cohort, all outcomes were mild to moderate at baseline (median 2 active joints, 1 limited joint, physician’s global 2.9cm, patient global 2.2cm, pain 3.1cm, CHAQ 0.8 and CHQ psychosocial 50). Overall improvements were evident in all outcomes over the first year then remained stable with no further improvements at the cohort level to five years.

Compared with those with oligoarticular JIA, patients with both polyarthritis and systemic subtypes experienced significantly poorer outcomes across all variables. The most extreme point estimates were experienced in RF-positive polyarticular JIA, having 3 more active and limited joints (both 95% CI 2, 4), 1cm higher physician’s (95% CI 0.4, 1.2) , parental (95% CI 0.5, 1.9) and pain (95% CI 0.3, 1.8) scores and 50% higher CHAQ scores (95% CI 1.2, 1.7). Young people with enthesitis-related, psoriatic and undifferentiated JIA experienced largely similar outcomes to those with oligoarthritis over follow-up.

Conclusion: On average, the largest improvement in physician and patient-reported outcomes occur in the first year following diagnosis, perhaps confirming the importance of early treat-to-target strategies. Patients with systemic and both polyarticular JIA subtypes have poorer parent and physician-reported outcomes than those with enthesitis-related, psoriatic, undifferentiated or oligoarthritis.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-impact-of-jia-on-physician-and-patient-reported-outcomes-over-the-first-five-years-following-diagnosis/