title: Paediatric rheumatology practice in the UK benchmarked against the British Society for Paediatric and Adolescent Rheumatology/Arthritis and Musculoskeletal Alliance Standards of Care for juvenile idiopathic arthritis.
abstract: OBJECTIVE
  To describe current clinical practice against the BSPAR/ARMA Standards of Care (SOCs) for children and young people (CYP) with incident JIA.
  
  
  METHODS
  Ten UK paediatric rheumatology centres (including all current centres nationally accredited for paediatric rheumatology higher specialist training) participated in a retrospective case notes review using a pretested pro forma based on the SOC. Data collected per centre included clinical service configuration and the initial clinical care for a minimum of 30 consecutive new patients seen within the previous 2 years and followed up for at least 6 months.
  
  
  RESULTS
  A total of 428 CYP with JIA (median age 11 years, range 1-21 years) were included, with complete data available for 73% (311/428). Against the key SOCs, 41% (175/428) were assessed ≤10 weeks from symptom onset, 60% (186/311) ≤4 weeks from referral, 26% (81/311) had eye screening at ≤6 weeks, 83% (282/341) had joint injections at ≤6 weeks, 59% (184/311) were assessed by a nurse specialist at ≤4 weeks and 45% (141/311) were assessed by a physiotherapist at ≤8 weeks. A median of 6% of patients per centre participated in clinical trials. All centres had access to eye screening and prescribed biologic therapies. All had access to a nurse specialist and physiotherapist. Most had access to an occupational therapist (8/10), psychologist (8/10), joint injection lists (general anaesthesia/inhaled analgesia) (9/10) and designated transitional care clinics (7/10).
  
  
  CONCLUSIONS
  This first description of UK clinical practice in paediatric rheumatology benchmarked against the BSPAR/ARMA SOCs demonstrates variable clinical service delivery. Considerable delay in access to specialist care is evident and this needs to be addressed in order to improve clinical outcomes.
authors.affiliation: Paediatric Rheumatology, Bristol Royal Hospital for Children, Bristol BS2 8BJ, UK. akhilamk@yahoo.com.
authors.forename: Akhila
authors.initials: A
authors.lastname: Kavirayani
authors.forename: Helen E
authors.initials: HE
authors.lastname: Foster
mesh_terms: D000293:Adolescent; D001171:Arthritis, Juvenile / Q000628:therapy*; D019985:Benchmarking; D002648:Child; D002675:Child, Preschool; D006297:Health Services Accessibility / Q000592:standards; D006801:Humans; D007223:Infant; D008485:Medical Audit; D011364:Professional Practice / Q000592:standards*; D012189:Retrospective Studies; D012219:Rheumatology / Q000592:standards*; D059039:Standard of Care; D061665:Time-to-Treatment / Q000592:standards; D006113:United Kingdom; D055815:Young Adult
keywords: ARMA; BSPAR; access to care; delay; juvenile idiopathic arthritis; paediatric rheumatology service; standards of care