DOP84 Nationwide incidence and prevalence of paediatric inflammatory bowel disease in Scotland 2015–2017 demonstrates the highest paediatric prevalence rate recorded worldwide

Abstract

Robust epidemiological data on paediatric inflammatory bowel disease (PIBD; IBD diagnosed <16 years of age) is vital to organising current healthcare provision and planning future service design. Historically, Scotland has the highest incidence of PIBD in the UK and one of the highest worldwide, however data on prevalence is lacking. We aimed to calculate an updated incidence rate as well as both point and period prevalence rates of PIBD in Scottish children between 2015 and 2017.Incident and prevalent cases of PIBD were prospectively recorded by the three Scottish regional paediatric gastroenterology networks covering all paediatric units nationwide. PIBD was defined as children <16 years of age with Crohn’s disease (CD), ulcerative colitis (UC) or Inflammatory Bowel Disease Unclassified (IBDU) according to internationally accepted diagnostic criteria. Incidence rate for the period 2015–2017, as well as point (30th June each year) and period prevalence (calendar year) were calculated against age-specific population data for Scotland. A relevant literature review of PIBD prevalence rates to 12.2017 was performed for comparison.In total, 330 patients with PIBD were diagnosed in Scotland within the 3-year period providing an overall incidence of 12.0/100000/year. The number of prevalent patients per year ranged from 523 to 541 with differences in rates for both gender and age: male 68.3 vs. female 47.4/100000/year; pre-school age (0–5 years) 5.8, primary school age (6–10 years) 39.7 and secondary school age (11–15 years) 143.1/100000/year. The highest point prevalence was 46.3/100000/year (95% CI 42.0–50.9) at 30 June 2017 and the highest period prevalence was 58.9/100000/year (95% CI 54.1–64.2) between 1 January 2016 and 31 December 2016. Breakdown of prevalent cases according to disease subtype was CD 39.5 (68%), UC 12.5 (22%) and IBDU 6.1/100000/year (10%). No major differences in prevalence rates across regions were noted, however different practices in transition to adult services are evident with 22/139 (16%) of patients being managed by PIBD services in North of Scotland >16 years of age; in contrast to 56/156 (36%) in South-East Scotland and 100/308 (32%) in West of Scotland.The PIBD prevalence rate in Scotland is higher than any other cohort (aged <16 years) published in the worldwide literature. These prevalence rates are in keeping with the high incidence rate, which continues to rise, and the chronic nature of this disease. Given that the true case load within paediatric services includes patients >16 years, who are often not transitioned until they have completed schooling, these data urgently need to be explored across the UK as if replicated would have significant implications for the PIBD workforce overall.