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Diagnostic Workup of Paediatric Patients With Inflammatory Bowel Disease in Europe: Results of a 5-Year Audit of the EUROKIDS Registry

de Bie, Charlotte I.*; Buderus, Stephan; Sandhu, Bhupinder K.; de Ridder, Lissy*; Paerregaard, Anders§; Veres, Gabor||; Dias, Jorge Amil; Escher, Johanna C.*and the EUROKIDS Porto IBD Working Group of ESPGHANMembers of the EUROKIDS Porto IBD Working Group of ESPGHAN: J.C. Escher, L. de Ridder (Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands); J. Amil Dias, E. Trindade (Hospital S. João, Porto, Portugal); K. Bochenek, I. Lazowska (Medical University of Warsaw, Warsaw, Poland); S. Buderus (St-Marien-Hospital, Bonn, Germany); Y. Bujanover (Edmond & Lily Safra Children's Hospital, Sheba Medical Centre, Tel Hashomer, Israel); S.K.F. Chong (Queen Mary's Hospital for Children, Surrey, United Kingdom); S. Cucchiara (University of Rome, La Sapienza, Rome, Italy); J.M.E. Fell (Chelsea and Westminster Hospital, London, UK); J. Henker (Children's Hospital, Technical University Dresden, Dresden, Germany); J.P. Hugot (Hôpital Robert Debré, Paris, France); M. Sladek (Polish-American Children's Hospital, Jagiellonian University, Cracow, Poland); S. Kolacek (Children's Hospital Zagreb, Zagreb, Croatia); S. Koletzko (Dr von Haunersches Kinderspital, Ludwig-Maximillians-University, Munich, Germany); A. Levine (E. Wolfson Medical Centre, Tel Aviv, Israel); P. Lionetti (Meyer Hospital, Florence, Italy); J. Maly (Charles University in Prague, Faculty of Medicine and University Hospital in Hradec Králové, Czech Republic); M.S. Murphy (Birmingham Children's Hospital, Birmingham, United Kingdom); A. Paerregaard (Hvidovre University Hospital, Copenhagen, Denmark); B.K. Sandhu, C. Spray (Royal Hospital for Children, Bristol, United Kingdom); Y. Finkel, L. Holmquist (Akademiska Barnsjukhuset, Uppsala, Sweden); F. Ruemmele (Hôpital Necker-Enfants Malades, Paris, France); G. Veres (Semmelweis University, Budapest, Hungary); A. Staiano (University of Naples Federico II, Naples, Italy); P. Malmborg, Y. Finkel, H. Hildebrand (Karolinska Institute, Stockholm, Sweden); G. Veereman (UZ Brussels, Brussels, Belgium); L. Eglite (Children's University Hospital, Riga, Latvia); K. Keller (Stiftung Deutsche Klinik fur Diagnostik GmbH, Wiesbaden, Germany); O. Hradsky, J. Nevoral, J. Bronsky (University Hospital Motol, Prague, Czech Republic); R. Orel (Children's Hospital Ljubljana, Ljubljana, Slovenia); A. Ravelli (Children's Hospital Brescia, Brescia, Italy); E. Roma (University of Athens, Athens, Greece); P. Socha (Children's Memorial Health Institute, Warsaw, Poland); K. Størdal (Ostfold Central Hospital, Frederikstad, Norway); G. Perminow (Oslo University Hospital, Oslo, Norway); S. van Biervliet (UZ Gent, Gent, Belgium).

Journal of Pediatric Gastroenterology and Nutrition: March 2012 - Volume 54 - Issue 3 - p 374–380
doi: 10.1097/MPG.0b013e318231d984
Original Articles: Gastroenterology

Objective: In 2005, the Inflammatory Bowel Disease (IBD) Working Group of the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition published consensus guidelines on the diagnostic workup of paediatric IBD, the Porto criteria. According to these guidelines, children suspected of having IBD should undergo an oesophagogastroduodenoscopy (OGD), ileocolonoscopy, and (except in cases of definitive ulcerative colitis) adequate imaging of the small bowel. To audit and evaluate the diagnostic workup of paediatric patients with IBD in Europe, the Working Group created EUROKIDS, a prospective, Web-based registry of newly diagnosed paediatric patients with IBD.

Methods: Patients with IBD (ages 0–18 years) were registered in 44 centres in 18 countries. Data on diagnostic workup were analysed according to the year of diagnosis, type of IBD, and centre size. Diagnostic yield of OGD and ileal intubation were evaluated.

Results: Between 2004 and 2009, 2087 newly diagnosed patients were correctly registered. Both OGD and ileocolonoscopy had been performed in 64% of all of the patients and increased significantly from year 1 (52 %) to 5 (71%, P < 0.001). Small-bowel follow-through use decreased during the years (year 1 n = 213, year 5 n = 108; P < 0.001), whereas magnetic resonance imaging use increased (year 1 n = 25, year 5 n = 171; P < 0.001). Patients diagnosed as having Crohn disease (CD, 59%) and ulcerative colitis (58%) were more likely to have had a complete diagnostic workup than patients diagnosed as having IBD unclassified (45%). In CD, the diagnostic yield of OGD was 7.5% and the yield of ileal intubation was 13%.

Conclusions: The quality of diagnostic workup in paediatric patients with IBD increased steadily between 2004 and 2009. Small-bowel imaging by magnetic resonance imaging superseded the use of small-bowel follow-through. OGD and ileal intubation contributed to a definitive diagnosis of CD.

*Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands

Department of Paediatrics, St-Marien Hospital, Bonn, Germany

Department of Paediatric Gastroenterology, Royal Hospital for Children, Bristol, UK

§Department of Paediatrics, Hvidovre University Hospital, Copenhagen, Denmark

||1st Department of Paediatrics, Semmelweis University, Budapest, Hungary

Department of Paediatrics, Hospital S. João, Porto, Portugal.

Address correspondence and reprint requests to Johanna C. Escher, MD, PhD, Department of Paediatric Gastroenterology, Erasmus MC-Sophia Children's Hospital, Dr Molewaterplein 60, 3015 GJ Rotterdam, The Netherlands (e-mail:

Received 9 June, 2011

Accepted 8 August, 2011

The EUROKIDS project received financial support from ESPGHAN.

The authors report no conflicts of interest.

Copyright 2012 by ESPGHAN and NASPGHAN