P426. A nation-wide registry of pediatric IBD: Epidemiology, activity indices, laboratory data, therapeutic managements, and one year follow-up


G. Veres1, M.o. Hupir2, M. Papp3, P. Lakatos4

1Ist Dept. of Pediatrics, Budapest, Hungary; 2Dept of Pediatrics, Hungary; 3University of Debrecen, 2nd Department of Medicine, Debrecen, Hungary; 4Semmelweis University, 1st Department of Medicine, Budapest, Hungary



Background: There is no nation-wide pediatric Inflammatory Bowel Disease (IBD) registry including PCDAI (Pediatric Crohn's disease Activity Index) and PUCAI (Pediatric Ulcerative Colitis Activity Index) at enrollment. In addition, there is no nation-wide pediatric IBD registry with follow-up. Our aim was to evaluate the incidence and basic characteristics of pediatric IBD in a prospective nation-wide registry. In addition, laboratory data, anthropometrical data, activity indices (PCDAI, PUCAI), and therapeutic managements were included and followed-up.

Methods: From January 1, 2007 to December 31, 2009, pediatric patients with IBD were prospectively registered, evaluated, and followed-up.

Results: A total of 420 new IBD cases, aged less than 18 years, were identified. The incidence rate of IBD was 7.48/105 (95% CI 6.34/105–8.83/105). The incidence for CD was 4.72/105 (95% CI 3.82–5.79), for UC 2.32/105 (95% CI 1.71–3.09), and for IBD‑U (IBD-undetermined) 0.45/105 (95% CI 0.22–0.84). Extraintestinal manifestations at the time of diagnosis were 15.6%. Forty-eight percent of CD, 55% of UC had moderate to severe disease at onset, but twelve months later only a tenth of children with UC and CD had moderate to severe disease activity. The median activity index in CD was 30 (PCDAI, range 5–65) and the median of PUCAI was 35 (PUCAI, n = 69; range 0–80). Upper gastrointestinal involvement in CD was associated with milder disease activity. Iron level correlated negatively, while CRP correlated positively with disease extension in UC. Immunomodulator (azathioprine) was used as a first-line therapy for 33.9% of children with CD at diagnosis (41% within 3 months after diagnosis). Frequency of azathioprine administration was 53% (107/202) at one-year follow-up. Infliximab was used in 6.4% (16/202) of CD patients after one year of diagnosis. Need for surgery for any indication in CD was 24/205 (11.7%) within one year of diagnosis.

Conclusions: Nation-wide registry including laboratory data, activity indices and therapeutic managements with follow-up serves important data useful in everyday clinical practice.