Inflammatory bowel diseases · 2026
Incidence and Natural History of Very Early-Onset Inflammatory Bowel Disease in Scotland: National and Regional Cohort Studies.
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Henderson Paul, Gerasimidis Konstantinos, Russell Richard K, Chalmers Iain, Hansen Richard, Wilson David C
Аннотация
BACKGROUND: Very early-onset inflammatory bowel disease (VEOIBD) (diagnosed under 6 years of age) has attracted considerable attention in recent years, with monogenic forms providing insight into immune dysregulation. However, the majority of VEOIBD patients have a classical polygenic phenotype and a similar disease course to older children.
METHODS: The study sought to assess the incidence trends of VEOIBD in Scotland from 1981 to 2014 and to describe the natural history, phenotype, and treatment burden of VEOIBD in a regional cohort from South-East Scotland (1997-2021).
RESULTS: Nationally, 128 (8.1%) of 1567 incident pediatric inflammatory bowel disease (IBD) patients (<16 years of age at diagnosis) were VEOIBD; 10 (8%) of 128 were diagnosed <2 years of age. The incidence of VEOIBD rose from 0.64 per 100 000 per year (1981-1985) to 2.73 per 100 000 per year (2011-2014) (P = .002), an incidence rate ratio of 4.3 (95% confidence interval, 2.4-8.3). The average annual percentage change was 3.9% (95% confidence interval, 2.1%-5.7%) (P < .05). Crohn's disease was the most common subtype (63%); the median age at diagnosis was 4.4 years. The regional cohort (n = 46) had a median follow-up of 11.9 years. Crohn's disease cases presented with isolated colonic involvement in 47%, with pancolitis present in 64% of ulcerative colitis cases. Treatment exposures included immunosuppression (76%), corticosteroids (67%), and anti-tumor necrosis factor therapies (50%). A total of 11% were on no IBD-specific therapy at last follow-up, 11% required surgery and no patient had a diagnosis of monogenic IBD, cancer, or death.
CONCLUSIONS: Scotland has a high incidence of VEOIBD, with monogenic IBD exceptionally rare. Although VEOIBD disease burden is high, treatment outcomes are broadly similar to those diagnosed later in childhood based on previous studies.
METHODS: The study sought to assess the incidence trends of VEOIBD in Scotland from 1981 to 2014 and to describe the natural history, phenotype, and treatment burden of VEOIBD in a regional cohort from South-East Scotland (1997-2021).
RESULTS: Nationally, 128 (8.1%) of 1567 incident pediatric inflammatory bowel disease (IBD) patients (<16 years of age at diagnosis) were VEOIBD; 10 (8%) of 128 were diagnosed <2 years of age. The incidence of VEOIBD rose from 0.64 per 100 000 per year (1981-1985) to 2.73 per 100 000 per year (2011-2014) (P = .002), an incidence rate ratio of 4.3 (95% confidence interval, 2.4-8.3). The average annual percentage change was 3.9% (95% confidence interval, 2.1%-5.7%) (P < .05). Crohn's disease was the most common subtype (63%); the median age at diagnosis was 4.4 years. The regional cohort (n = 46) had a median follow-up of 11.9 years. Crohn's disease cases presented with isolated colonic involvement in 47%, with pancolitis present in 64% of ulcerative colitis cases. Treatment exposures included immunosuppression (76%), corticosteroids (67%), and anti-tumor necrosis factor therapies (50%). A total of 11% were on no IBD-specific therapy at last follow-up, 11% required surgery and no patient had a diagnosis of monogenic IBD, cancer, or death.
CONCLUSIONS: Scotland has a high incidence of VEOIBD, with monogenic IBD exceptionally rare. Although VEOIBD disease burden is high, treatment outcomes are broadly similar to those diagnosed later in childhood based on previous studies.