Paediatrics Publications

Authors

Basavaraj Kerur, University of Massachusetts Chan Medical School
Eric I. Benchimol, Children's Hospital of Eastern Ontario, Ottawa
Karoline Fiedler, Hospital for Sick Children University of Toronto
Marisa Stahl, Children's Hospital Denver
Jeffrey Hyams, Connecticut Children's Medical Center
Michael Stephens, Mayo Clinic
Ying Lu, Cohen Children’s Medical Center
Marian Pfefferkorn, Riley Children's Hospital
Raza Alkhouri, University at Buffalo, The State University of New York
Jennifer Strople, Ann & Robert H. Lurie Children's Hospital of Chicago
Judith Kelsen, University of Pennsylvania Perelman School of Medicine
Leah Siebold, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh
Alka Goyal, Children's Mercy
Joel R. Rosh, Atlantic Health
Neal Leleiko, Hasbro Children's Hospital
Johan Van Limbergen, Universiteit van Amsterdam
Anthony L. Guerrerio, Johns Hopkins School of Medicine
Ross Maltz, Nationwide Children's
Lina Karam, Texas Children's Hospital Houston
Eileen Crowley, Western UniversityFollow
Anne Griffiths, Hospital for Sick Children University of Toronto
Melvin B. Heyman, UCSF Benioff Children‘s Hospital
Mark Deneau, The University of Utah
Keith Benkov, Icahn School of Medicine at Mount Sinai
Joshua Noe, Medical College of Wisconsin
Dedrick Mouton, Monroe Carell Jr. Children's Hospital at Vanderbilt
Helen Pappa, St. Louis Children's Hospital
Joseph A. Galanko, The University of North Carolina at Chapel Hill
Scott Snapper, Children's Hospital Boston

Document Type

Article

Publication Date

3-1-2021

Journal

Inflammatory Bowel Diseases

Volume

27

Issue

3

First Page

295

Last Page

302

URL with Digital Object Identifier

10.1093/ibd/izaa080

Abstract

Background: The incidence of very early onset inflammatory bowel disease (VEOIBD) is increasing, yet the phenotype and natural history of VEOIBD are not well described. Methods: We performed a retrospective cohort study of patients diagnosed with VEOIBD (6 years of age and younger) between 2008 and 2013 at 25 North American centers. Eligible patients at each center were randomly selected for chart review. We abstracted data at diagnosis and at 1, 3, and 5 years after diagnosis. We compared the clinical features and outcomes with VEOIBD diagnosed younger than 3 years of age with children diagnosed with VEOIBD at age 3 to 6 years. Results: The study population included 269 children (105 [39%] Crohn's disease, 106 [39%] ulcerative colitis, and 58 [22%] IBD unclassified). The median age of diagnosis was 4.2 years (interquartile range 2.9-5.2). Most (94%) Crohn's disease patients had inflammatory disease behavior (B1). Isolated colitis (L2) was the most common disease location (70% of children diagnosed younger than 3 years vs 43% of children diagnosed 3 years and older; P = 0.10). By the end of follow-up, stricturing/penetrating occurred in 7 (6.6%) children. The risk of any bowel surgery in Crohn's disease was 3% by 1 year, 12% by 3 years, and 15% by 5 years and did not differ by age at diagnosis. Most ulcerative colitis patients had pancolitis (57% of children diagnosed younger than 3 years vs 45% of children diagnosed 3 years and older; P = 0.18). The risk of colectomy in ulcerative colitis/IBD unclassified was 0% by 1 year, 3% by 3 years, and 14% by 5 years and did not differ by age of diagnosis. Conclusions: Very early onset inflammatory bowel disease has a distinct phenotype with predominantly colonic involvement and infrequent stricturing/penetrating disease. The cumulative risk of bowel surgery in children with VEOIBD was approximately 14%-15% by 5 years. These data can be used to provide anticipatory guidance in this emerging patient population.

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