title: 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: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Paediatric Rheumatology, Great North Children's Hospital, Newcastle Hospitals NHS Foundation Trust.
authors.forename: Flora
authors.initials: F
authors.lastname: McErlane
authors.affiliation: Paediatric Rheumatology, Great North Children's Hospital, Newcastle Hospitals NHS Foundation Trust, Rheumatology, Institute Cellular Medicine, Newcastle University, Newcastle upon Tyne.
authors.forename: Helen E
authors.initials: HE
authors.lastname: Foster
authors.affiliation: Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, Institute for Inflammation and Repair, Faculty of Medical and Human Sciences, University of Manchester, Manchester.
authors.forename: Roberto
authors.initials: R
authors.lastname: Carrasco
authors.affiliation: Paediatric Rheumatology, Alder Hey Children's Hospital, Liverpool.
authors.forename: Eileen M
authors.initials: EM
authors.lastname: Baildam
authors.affiliation: Rheumatology, Royal Manchester Children's Hospital, Manchester.
authors.forename: S E Alice
authors.initials: SE
authors.lastname: Chieng
authors.affiliation: Paediatric Rheumatology, Royal Hospital for Children, Glasgow, Paediatric Rheumatology, Royal Hospital for Sick Children, Edinburgh.
authors.forename: Joyce E
authors.initials: JE
authors.lastname: Davidson
authors.affiliation: Arthritis Research UK Centre for Adolescent Rheumatology, Division of Medicine, University College London (UCL).
authors.forename: Yiannis
authors.initials: Y
authors.lastname: Ioannou
authors.affiliation: Infection, Inflammation and Rheumatology Section, and Arthritis Research UK Centre for Adolescent Rheumatology, UCL Institute of Child Health, London.
authors.forename: Lucy R
authors.initials: LR
authors.lastname: Wedderburn
authors.affiliation: Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, Institute for Inflammation and Repair, Faculty of Medical and Human Sciences, University of Manchester, Manchester, Arthritis Research UK Centre for Genetics and Genomics, Centre for Musculoskeletal Research, Institute for Inflammation and Repair Faculty of Medical and Human Sciences, University of Manchester, and.
authors.forename: Wendy
authors.initials: W
authors.lastname: Thomson
authors.affiliation: Arthritis Research UK Centre for Epidemiology, Centre for Musculoskeletal Research, Institute for Inflammation and Repair, Faculty of Medical and Human Sciences, University of Manchester, Manchester, NIHR Manchester Musculoskeletal Biomedical Research Unit, Central Manchester NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK kimme.hyrich@manchester.ac.uk.
authors.forename: Kimme L
authors.initials: KL
authors.lastname: Hyrich
mesh_terms: D001171:Arthritis, Juvenile / Q000175:diagnosis / Q000473:pathology / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D011446:Prospective Studies; D012017:Referral and Consultation / Q000639:trends*; D012219:Rheumatology / Q000379:methods / Q000706:statistics & numerical data*; D012720:Severity of Illness Index; D061665:Time-to-Treatment / Q000639:trends*; D016896:Treatment Outcome
keywords: disease activity; epidemiology; juvenile idiopathic arthritis; outcomes research; treatment