Incidence, Clinical Characteristics, and Natural History of Pediatric IBD in Wisconsin

Abstract

Background Epidemiological studies of pediatric inflammatory bowel diseases (IBD) are needed to generate etiological hypotheses and inform public policy; yet, rigorous population-based studies of the incidence and natural history of Crohn’s disease (CD) and ulcerative colitis (UC) in the United States are limited. Methods We developed a field-tested prospective system for identifying all new cases of IBD among Wisconsin children over an 8-year period (2000–2007). Subsequently, at the end of the study period, we retrospectively reconfirmed each case and characterized the clinical course of this incident cohort. Results The annual incidence of IBD among Wisconsin children was 9.5 per 100,000 (6.6 per 100,000 for CD and 2.4 per 100,000 for UC). Approximately 19% of incident cases occurred in the first decade of life. Over the 8-year study period, the incidence of both CD and UC remained relatively stable. Additionally, (1) childhood IBD affected all racial groups equally, (2) over a follow-up of 4 years, 17% of patients with CD and 13% of patients with patients with UC required surgery, and (3) 85% and 40% of children with CD were treated with immunosuppressives and biologics, respectively, compared with 62% and 30% of patients with UC. Conclusions As in other North American populations, these data confirm a high incidence of pediatric-onset IBD. Importantly, in this Midwestern U.S. population, the incidence of CD and UC seems to be relatively stable over the last decade. The proportions of children requiring surgery and undergoing treatment with immunosuppressive and biological medications underscore the burden of these conditions.

Impact of medical therapy on patients with Crohn’s disease requiring surgical resection

“…A significantly higher proportion of patients were diagnosed at a young age in the anti-TNF exposed group. Younger patients with CD often have more aggressive disease that may lead to early surgery and requirement of anti-TNF agents [32][33][34][35] . Despite this, anti-TNF exposed still demonstrated longer median time to surgical resection.…”

NOD2 gene mutations in ulcerative colitis: useless or misunderstood?

“…IBD, including UC, has a great amount of heterogeneity, starting in the type and age of presentation, through natural history of disease and ending in the therapeutic requirements and response [17,21,22]. An old and still unachieved goal is to discover a way of predicting the disease evolution and thereby define a more appropriate and individually tailored monitoring and therapeutic approach [16][17][18][19].…”

“…Patients with UC demonstrate a certain degree of heterogeneity as the age of onset, disease extent, natural history, response to medical therapies, and need for surgery vary between individuals [17,21,22]. Among the UC susceptibility genes, HLA DRB1*0103 and the multidrug resistance gene 1 (MDR1/ABCB1) also contribute to clinical phenotype and natural history, being associated with extensive and severe disease [17,[23][24][25][26][27][28][29][30][31][32][33][34][35][36][37].…”

Monitoring adolescents and young people with inflammatory bowel disease during transition to adult healthcare

“…A recent systematic review has identified multiple risk factors for psychological morbidity including increased disease severity, lower socioeconomic status, corticosteroids, parental stress and older age at diagnosis 21. Furthermore, AYP may display regressive behaviour during transition22 and feel a sense of abandonment relating to transfer to adult care 23. AYP deal with IBD using a variety of coping strategies, commonly employing an ‘avoidant coping’ strategy where an individual distracts themselves with social diversion,24 behaviours associated with disease relapse 25.…”