Pediatric IBD-unclassified is less common than previously reported; Results of an 8-year audit of the EUROKIDS registry

Dwight A. Winter, Katarzyna Karolewska-Bochenek, Izabella Lazowska-Przeorek, Paolo Lionetti, M. Luisa Mearin, Sonny K. Chong, Eleftheria Roma-Giannikou, Jan Maly, Kaija Leena Kolho, Ron Shaoul, Annamaria Staiano, Gerard M. Damen, Tim De Meij, Daniëlle Hendriks, Elvira K. George, Dan Turner, Johanna C. Escher*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

41 Scopus citations


Background: Inflammatory bowel disease-unclassified (IBD-U) is diagnosed in ∼10% of pediatric and adolescent onset IBD patients. The EUROKIDS registry (2004) initiated by the Porto IBD working group of ESPGHAN prospectively monitors diagnostic workup of newly diagnosed pediatric and adolescent onset IBD patients. We aimed to describe diagnostic workup, phenotype, and change of diagnosis over time in pediatric IBD-U patients. Methods: Data were collected on children from 52 centers across 20 European countries and Israel, diagnosed with IBD from May 2005 through November 2013. Full endoscopy plus small bowel radiology was considered complete diagnostic workup. Participating centers reporting IBD-U patients were queried in 2014 for follow-up data. Results: IBD-U was the provisional first diagnosis in 265 of 3461 children (7.7%) (91/158 [58%] with pancolitis; 140 [53%] male), diagnosed more frequently under the age of 10 (median age 12.3 years, 89 [34%] under 10 years). Half (48%) had undergone complete diagnostic workup. Lack of small bowel radiology was the prevailing reason for incomplete workup. As a result of reinvestigations (endoscopy in 54%, radiology in 38%) during a median follow-up of 5.7 years (interquartile range, 2.5-7.8), a change in diagnosis from IBD-U to Crohn's disease (12%) or ulcerative colitis (20%) was reported. Conclusions: Only half of patients reported as IBD-U in EUROKIDS had undergone complete diagnostic workup. Follow-up with reinvestigations resulted in a reduction of IBD-U rate to 5.6%. A diagnosis of IBD-U becomes less likely in case of complete diagnostic workup. Implementation of clear diagnostic criteria will further reduce the rate of IBD-U in the future.

Original languageAmerican English
Pages (from-to)2145-2153
Number of pages9
JournalInflammatory Bowel Diseases
Issue number9
StatePublished - 12 Jun 2015

Bibliographical note

Publisher Copyright:
© 2015 Crohn's & Colitis Foundation of America, Inc.


  • EUROKIDS registry
  • IBD-unclassified
  • Porto criteria
  • childhood and adolescence
  • diagnosis


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