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Incidence, Paris Classification, and Follow-up in a Nationwide Incident Cohort of Pediatric Patients With Inflammatory Bowel Disease

Müller, Katalin E.*; Lakatos, Péter L.; Arató, András*; Kovács, Judit B.; Várkonyi, Ágnes§; Szűcs, Dániel§; Szakos, Erzsébet||; Sólyom, Enikő||; Kovács, Márta; Polgár, Marianne; Nemes, Éva#; Guthy, Ildikó**; Tokodi, István††; Tóth, Gergely‡‡; Horváth, Ágnes§§; Tárnok, András‡‡; Csoszánszki, Noémi¶¶; Balogh, Márta##; Vass, Noémi§; Bódi, Piroska***; Dezsőfi, Antal*; Gárdos, Lászl󆆆; Micskey, Éva‡‡‡; Papp, Mária§§§; Cseh, Áron*; Szabó, Dolóresz*; Vörös, Péter*; Veres, Gabor*Hungarian IBD Registry Group (HUPIR)

Journal of Pediatric Gastroenterology and Nutrition: November 2013 - Volume 57 - Issue 5 - p 576–582
doi: 10.1097/MPG.0b013e31829f7d8c
Original Articles: Gastroenterology

Objectives: The aim of the study was to evaluate the incidence, baseline disease characteristics, and disease location based on the Paris classification in pediatric inflammatory bowel disease (IBD) in the Hungarian nationwide inception cohort. In addition, 1-year follow-up with therapy was analyzed.

Methods: From January 1, 2007 to December 31, 2009, newly diagnosed pediatric patients with IBD were prospectively registered. Twenty-seven pediatric gastroenterology centers participated in the data collection ensuring the data from the whole country. Newly diagnosed patients with IBD younger than 18 years were reported. Disease location was classified according to the Paris classification.

Results: A total of 420 patients were identified. The incidence rate of pediatric IBD was 7.48/105 (95% confidence interval [CI] 6.34/105–8.83/105). The incidence for Crohn disease (CD) was 4.72/105 (95% CI 3.82–5.79), for ulcerative colitis (UC) 2.32/105 (95% CI 1.71–3.09), and for IBD-unclassified 0.45/105 (95% CI 0.22–0.84). Most common location in CD was L3 (58.7%); typical upper gastrointestinal abnormalities (ulcer, erosion and aphthous lesion) were observed in 29.9%. Extensive colitis in patients with UC (E4, proximal to hepatic flexure) was the most common disease phenotype (57%), whereas only 5% of children had proctitis. A total of 18.6% of patients had ever severe disease (S1). Frequency of azathioprine administration at diagnosis was 29.5% in patients with CD, and this rate increased to 54.6% (130/238) at 1-year follow-up. In UC, only 3.3% received azathioprine initially, and this rate elevated to 22.5% (25/111). Use of corticosteroid decreased from 50% to 15.3% in patients with UC. Rate of bowel resection in patients with CD during the first year of follow-up was 5%.

Conclusions: The incidence of pediatric IBD in Hungary was among the higher range reported. This is the first large, nationwide incident cohort analyzed according to the Paris classification, which is a useful tool to determine the characteristic pediatric CD phenotype.

*1st Department of Pediatrics

1st Department of Medicine, Semmelweis University

Heim-Madarász Hospital, Budapest

§Department of Pediatrics, Szent-Györgyi Albert University, Szeged

||BAZ County Hospital, Miskolc

Petz County Hospital, Győr

#Department of Pediatrics, Medical and Health Science Center, University of Debrecen, Debrecen

**Jósa Hospital, Nyíregyháza

††Szt. György Hospital, Székesfehérvár

‡‡Department of Pediatrics, University of Pécs, Pécs

§§Csolnoky Hospital, Veszprém, Hungary

¶¶2nd Department of Pediatrics, Semmelweis University, Budapest

##Markusovszky Hospital, Szombathely

***Pándy Hospital, Gyula

†††County Hospital, Zalaegerszeg

‡‡‡Budai Children's Hospital, Budapest

§§§2nd Department of Medicine, University of Debrecen, Debrecen, Hungary.

Address correspondence and reprint requests to Gábor Veres, MD, PhD, 1st Department of Pediatrics, Semmelweis University, 53 Bókay Street, 1083 Budapest, Hungary (e-mail:

Received 1 April, 2013

Accepted 27 May, 2013

Hungarian IBD Registry Group (HUPIR): Ildikó Kis, Szt. Borbála Hospital, Tatabánya, 2800, Hungary; Éva Pollák, Magyar Hospital, Ajka, 8401, Hungary; Ildikó Rosta, Schweitzer Hospital, Hatvan, 3301, Hungary; Károly Schultz and Ferenc Harangi, Balassa Hospital, Szekszárd 7101, Hungary; Katalin Szabados, Hetényi Hospital, Szolnok, 5000, Hungary; Erzsébet Szathmári, Kenézy Hospital, Debrecen, 4043, Hungary; Judit Czelecz and Katalin Szigeti, Bethesda Children's Hospital, Budapest 1146, Hungary; Katalin Tamás, Budapest, Hungary; András Tóth, Szt. László Hospital, Budapest 1097, Hungary; Éva Vajdovich, Bugyi Hospital, Szentes, 6600, Hungary; Gabriella Tomcsa, Jósa Hospital, Nyíregyháza, 4400, Hungary; Erika Tomsits, MD, PhD, 2nd Department of Pediatrics, Semmelweis University, Budapest, 1094, Hungary, Kriszta Molnár, 1st Department of Pediatrics, Semmelweis University, Budapest, 1083, Hungary, Petra A. Golovics, MD, 1st Department of Medicine, Semmelweis University, Budapest, 1083, Hungary, Barbara D. Lovász, MD, 1st Department of Medicine, Semmelweis University, Budapest, 1083, Hungary

G.V. is holder of the János Bolyai Research grant.

This article was supported by the János Bolyai Research and Scholarship of the Hungarian Academy of Sciences (OTKA-K 105530).

The authors report no conflicts of interest.

© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,