DOP037 Long-term outcome of paediatric-onset ulcerative colitis: early years are shaping the future

Data on long-term outcome of paediatric-onset ulcerative colitis (UC) are scarce. Methods: All patients recorded by the EPIMAD Registry between 1988 and 2004 with a diagnosis of UC before the age of 17 years were included. The cumulative risks of receiving immunosuppressants (IS, including azathioprine and/or methotrexate and/or cyclosporine) and antiTNFα therapy, as well as undergoing colectomywere estimated via the Kaplan-Meier method. Results: 159 paediatric-onset UC patients with a follow-up ≥ 2 years were identified (5% of all cases of UC), including 92 females. Median age at diagnosis was 14.5 years [IQR: 11.4-16.1] and median duration of follow-up was 11.5 years [8.2-15.8]. At diagnosis 25% of children had proctitis (E1), 38% left-sided colitis (E2) and 37% extensive colitis (E3). Disease course was characterised by disease extension in 50% of patients (50 among 101 E1 and E2). Cumulative risks of colonic extension were 11% at 1 year, 48% at 5 years, 54% at 10 years and 57% at 15 years. At diagnosis 12 (7.6%) patients had extra intestinal manifestations and 40 (25%) at maximal follow-up including articular manifestations (n= 27). Cumulative probabilities of receiving IS and anti-TNFα therapy were respectively 20% and 0.5% at 2 years, 28% and 4% at 5 years, 32% and 7% at 10 years and 35% and 13% at 15 years. Cumulative probabilities of colectomy were 6% at 1 year, 20% at 5 years, 21% at 10 years and 24% at 15 years. Conclusions: In this large population-based cohort of paediatric-onset UC disease the rate of disease extension and colectomy rapidly increased within the first 6 years after diagnosis and then remained stable. These data emphasize the need for early intervention to modify the natural history of paediatric UC.