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.

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).
CONCLUSION: 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.