P800 Five-year prospective follow-up of paediatric IBD patients based on HUPIR (Hungarian paediatric IBD registry). (16th January 2018)

• Record Type: Journal Article
• Authors: Müller, K E; Veres, G
• Is Part Of: Journal of Crohn's and colitis. Volume 12:Number 1(2018:Jan.)Supplement 1
• Page Start: S517
• Page End: S517
• Publication Date: 2018-01-16
• Subjects: Inflammatory bowel diseases -- Periodicals; 616.344005
• DOI: 10.1093/ecco-jcc/jjx180.927
• Languages: English
• ISSNs: 1873-9946

Abstract

Abstract: Background: There is no nation-wide, long-term follow-up epidemiological study of paediatric inflammatory bowel disease (IBD), especially in the era of biologicals. We present the incidence of paediatric IBD in Hungary and the long-term follow-up. Methods: Newly diagnosed paediatric IBD patients (ages 0–18 years) are registered and followed-up yearly in this prospective, nation-wide registry (Hungarian Paediatric IBD Registry, HUPIR). The questionnaire at registration includes epidemiological data, disease extension, disease activity (PCDAI, PUCAI) and initial therapy. The follow-up questionnaire consists of questions about number of relapses, therapy (medication and surgery), extraintestinal manifestation and anthropometrical data. Descriptive statistical methods were applied for data analysis and Kaplan–Meier analyses for the rates of relapses, bowel resection and biological therapy during the follow-up. Results: Between 2007 and 2014, 1168 new IBD cases were identified (729 Crohn's disease (CD), 365 ulcerative colitis (UC) and 74 IBD-unclassified). Incidence of IBD increased from 7.1/100000 to 8.7/100000 during 8 years. One hundred and forty-seven newly diagnosed IBD cases (Crohn disease: n = 96, ulcerative colitis: n = 37, IBD-U: n = 14) were registered in 2010. Median age at diagnosis was 15 years in CD 13 years in UC and 12 years in IBD-U. In CD 21% of cases (17/82) had L1, 17% had L2 (14/82) and 61% had L3 (50/82) localisation based on Paris Classification. Nine percent of UC patients (3/35) had proctitis, 31% of children had E2 localisation (11/35), 11% of UC cases presented with extended colitis (4/35) and 49% of UC patients (17/35) had pancolitis (E4). Induction therapy in CD and UC were mainly steroid (CD: 64/96, [66%], UC: 19/37, [51%]) or mesalazine (CD: 87/96 [90%], UC: 31/37, [84%]) in Hungary. By the end of the 5 years all data were available for 62 children (38 CD, 20 UC, 4 IBD-U). The reason for loss of cases ( n = 81) was mainly the transition to adult gastroenterologist (70%, 56/81). Relapse was detected in 46% of CD children (48/96), and in 50% of UC cases (18/37). Six percent of UC children (2/37) and 6% of CD patients (6/97) had steroid dependency, and 2 CD children were refractory to steroid therapy. Biologicals were applied in 22% of children with CD during the 5 years (21/96). Three children with UC got biological therapy. Bowel resection was performed in 9% of CD children during the 5 years, no colectomy was performed in UC cases (0/37). Conclusions: Follow-up of paediatric IBD cases is difficult due to transition to adult health care. The management practice was different in Hungary from the international trends in 2010, however the disease course was similar to previous results.