Trends in paediatric rheumatology referral times and disease activity indices over a ten-year period among children and young people with Juvenile Idiopathic Arthritis: results from the childhood arthritis prospective Study

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.

Factors impacting referral of JIA patients to a tertiary level pediatric rheumatology center in North India: a retrospective cohort study

“…The median time to first PR visit at this Indian center was 4.1 months for the whole cohort and 3.3 months for group A. This is fairly comparable to the time described in high income countries: 3 [27] and 3.3 [28] months in France, 3 months in Germany [29], 3.8 months in Canada [30], 5.5 months in the UK [31] and 10 months in the United Arab Emirates [32]. In the EPOCA study the interval from onset to referral was 4.8 months in Africa and Middle East and 7.2 months in Southeast Asia [10].…”

“…In comparison, the European Union project Single Hub and Access point for PR in Europe (SHARE) survey which aimed to describe the current organization and delivery of specialist PR care across 29 European and allied countries estimated that nearly 70% of new patients were seen within 8 weeks of referral [39]. In a UK cohort, the median time between referral and assessment was 4 weeks [IQR 1.3, 8] and only 52.9% of the patients followed the BSPAR guideline and the JAM-Less recommendations of being assessed within 4 weeks of the referral letter [31] versus 100% in our center. This reduces significantly the total delay to the first PR visit.…”

Untimely illness: When diagnosis does not match age‐related expectations

“…Although the narratives specifically provide patient perspectives, these included their accounts and interpretations of how GPs responded to reported symptoms in similar ways. The narratives provide interesting illustrations of candidacy as a product of the interplay between patient, GP and the wider health system . Just as individuals may be inclined to seek age‐plausible explanations first, according to these accounts, so too did many GPs.…”

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

“…(12) These instruments are increasingly used as primary and secondary outcome measures in JIA clinical trials and have had a signi cant impact on our understanding of clinical outcomes; for example, recent observational studies consistently suggest that complete disease control (or inactive disease) is not routinely achieved in the clinical setting (13); in fact, routine clinical outcomes in JIA lag considerably behind those from clinical trials employing intensive or targeted early treatment regimes. (6,(14)(15)(16) Many of these modern disease activity instruments include patient/parent-reported variables; for example, the JIA Core Outcome Variables include a self-reported functional assessment (the Childhood Arthritis Assessment Questionnaire (CHAQ) and a 0-10cm visual analogue scale (VAS) for self-reporting of global well-being. (17) These assessment tools were designed by research teams to assess areas of concern highlighted by clinicians.…”