Referral, treatment patterns and change in quality of life in the first twelve months in children and young people with Juvenile Idiopathic Arthritis: an analysis of the association with ethnicity and socioeconomic position using data from a cohort s

OBJECTIVES: Delays in Juvenile Idiopathic Arthritis (JIA) diagnosis may impact long-term outcomes and health-related quality of life (HRQoL). This study investigated referral pathways, initial treatment patterns and changes in HRQoL among UK children and young people with JIA stratified by ethnic group and socioeconomic position. METHODS: Treatment-naive children and young people diagnosed with JIA between 2001 and 2019 were recruited into the Childhood Arthritis Prospective Study (CAPS). Outcomes included duration to first appointment, and change in HRQoL and disease activity following initial presentation. Associations between duration, presentation, and referral source with ethnicity and socioeconomic position, were assessed using adjusted Cox proportional hazards models. RESULTS: Of 1275 patients, 65% were female, 91% White ethnicity (5% Asian, 1% Black, 3% Mixed), and 27% in the most deprived socioeconomic group. Median age was 8 years.Median time to first appointment was 18 weeks, varying slightly by ethnic group but not socioeconomic position. Referral source and initial treatment were similar across groups. While disease activity and HRQoL improved over the first 12 months following first appointment in paediatric rheumatology for individuals with JIA, the overall HRQoL measures remained below population norms for people without JIA, with limited improvement beyond 1 year. Ethnicity and socioeconomic position were not associated with time to appointment, initial treatment, or changes in disease activity or HRQoL. CONCLUSION: In this national inception cohort, ethnicity and socioeconomic position do not appear to be associated with access to specialist care, initial treatment, or early clinical outcomes. Persistent low HRQoL despite reduced disease activity highlights the need to address physical and psychosocial wellbeing beyond disease control.