A recent study described the phenotypic results of a prospective, web-based registry of new-onset pediatric inflammatory bowel disease (IBD) in 17 European countries and Israel (Inflamm Bowel Dis 2013; 19: 378-85).
The EUROKIDS Registry included 582 pediatric Crohn’s Disease (CD) patients classified according to Paris classification:
- 16% with L1 involvement of the terminal ileum only
- 27% with L2 colonic involvement only (more common in younger children)
- 53% with L3 involvement of the ileum and colon
- 4% with L4 isolated upper GI disease. Upper tract disease can be further subdivided into L4A esophagogastric disease and L4B jejunal/proximal ileal disease.
- *Upper GI disease can coexist with L1, L2 or L3. In this study, 34 (6%) had esophageal involvement, 102 (18%) had gastric involvement, and 100 (17%) had duodenal involvement.
- In this study, 165 of the 507 patients did not undergo small bowel imaging. Of those who did, 64% had small bowel follow-through, 38% had MRI, 6% CT, and 5% video capsule.
- Perianal disease (e.g.. fistula or abscess) noted in 9% at diagnosis.
- Granulomas were found in 43% of patients who had biopsies from at least 10 segments of the GI tract
- 82% of CD patients had nonstricturing, nonpenetrating disease (B1), 12% had stricturing disease (B2) and 5% had penetrating disease (B3). 2% had both stricturing and penetrating disease.
- Extraintestinal manifestations were seen in 20% of the study population.
- The authors estimated that the diagnostic yield of upper endoscopy in the workup for pediatric IBD was 7.5% and for intubation of the ileum/ileoscopy 13%.
Study limitations included a selection bias of centers and pediatric gastroenterologists with a special interest in IBD. Also, in this registry, older adolescents are underrepresented. In about one-third of the centers, patients older than 15 years are seen primarily by adult gastroenterologists.