Abstract
Objectives. The medical management of JIA has advanced significantly over the past 10 years. It is not known whether these changes have impacted on outcomes. The aim of this analysis was to identify and describe trends in referral times, treatment times and 1-year outcomes over a 10-year period among children with JIA enrolled in the Childhood Arthritis Prospective Study.Methods. The Childhood Arthritis Prospective Study is a prospective inception cohort of children with new-onset inflammatory arthritis. Analysis included all children recruited in 2001–11 with at least 1 year of follow-up, divided into four groups by year of diagnosis. Median referral time, baseline disease pattern (oligoarticular, polyarticular or systemic onset) and time to first definitive treatment were compared between groups. Where possible, clinical juvenile arthritis disease activity score (cJADAS) cut-offs were applied at 1 year.Results. One thousand and sixty-six children were included in the analysis. The median time from symptom onset and referral to first paediatric rheumatology appointment (22.7–24.7 and 3.4–4.7 weeks, respectively) did not vary significantly (∼20% seen within 10 weeks of onset and ∼50% within 4 weeks of referral). For oligoarticular and polyarticular disease, 33.8–47 and 25.4–34.9%, respectively, achieved inactive disease by 1 year, with ∼30% in high disease activity at 1 year. A positive trend towards earlier definitive treatment reached significance in oligoarticular and polyarticular pattern disease.Conclusion. Children with new-onset JIA have a persistent delay in access to paediatric rheumatology care, with one-third in high disease activity at 1 year and no significant improvement over the past 10 years. Contributing factors may include service pressures and poor awareness. Further research is necessary to gain a better understanding and improve important clinical outcomes.
Highlights
Inflammatory arthritis occurs in 10:100 000 children each year [1], with the majority subsequently diagnosed with JIA
Clinical juvenile arthritis disease activity score cut-offs were applied at 1 year
The median time from symptom onset and referral to first paediatric rheumatology appointment (22.724.7 and 3.44.7 weeks, respectively) did not vary significantly (20% seen within 10 weeks of onset and 50% within 4 weeks of referral)
Summary
Inflammatory arthritis occurs in 10:100 000 children each year [1], with the majority subsequently diagnosed with JIA. Delay in access to paediatric rheumatology care is important and predicts poorer disease outcomes for children and young people (CYP) with JIA [46]. The standards stipulate that all children with JIA should be assessed by a paediatric rheumatology team within 10 weeks of symptom onset and within 4 weeks of referral [7]. In a recent (2013) study, 10 UK paediatric rheumatology centres participated in a retrospective review of clinical practice; 41% patients (175/ 428) were seen within 10 weeks of symptom onset and 60% (186/311) had the first paediatric rheumatology appointment within 4 weeks of the initial referral [8]. There are no prospective UK-wide studies of trends in access to care and associated clinical outcomes
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