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P605. Presentation and progression of childhood-onset inflammatory bowel disease in northern Stockholm County


Some comparative studies have suggested that childhood-onset IBD is characterized by extensive intestinal involvement at diagnosis and increasing disease territory over time [1]. Prognostic studies of population-based childhood-onset IBD cohorts have reported substantial risks for surgery and complicated disease behavior [2,3]. Here we report the disease progression of patients diagnosed with IBD during childhood in a general population-based cohort from northern Stockholm.


Medical records of all 280 patients diagnosed in the period 1990–2007 with childhood-onset IBD (<16 years) in northern Stockholm County were followed until 2011 (median follow-up time was 8.8 years). Symptom burden for each patient was evaluated for every five years period after diagnosis using criteria from Saint-Antoine Hospital, Paris. Development of disease phenotype was classified according to the Montreal IBD classification. The cumulative risk of intra-abdominal surgery was estimated using the Kaplan–Meier method.


The proportion of IBD patients with disabling symptoms significantly decreased over time (0–4 years: 32%, 5–9 years: 22%, 10–14 years: 15%, p < 0.01).

Among the 74 patients with ulcerative colitis (UC), disease extension at presentation was classified as: E1 5%, E2 23% and E3 72%. Among the 200 patients with Crohn's disease (CD) location at presentation was classified as: L1 9%, L2 75%, L3 16% and L4 15%. Extension of the disease territory during follow-up was observed in 22% of the UC and 15% of the CD patients that did not present with maximal disease extension at diagnosis. Complicated disease behavior in CD patients was observed in 10% at diagnosis and in 18% at end of follow-up. The cumulative risk of colectomy for UC patients was 8% after 10 years. The cumulative risk of intra-abdominal surgery for CD patients was 22% after 10 years.


Most patients with an IBD diagnosis during childhood in northern Stockholm were not troubled by disabling symptoms and the symptom burden in the cohort decreased over time.

Patients with childhood-onset UC were characterized by extensive colitis but had a low risk of colectomy during the follow-up period, when compared with both adult and childhood-onset population-based cohorts.

Patients with childhood-onset CD were characterized by isolated colonic disease that was relatively stable over time and associated with a relatively low risk of complications and intra-abdominal surgery, when compared with both adult and childhood-onset IBD population-based cohorts.

Our findings question the proposed dynamic and aggressive nature of the childhood-onset IBD phenotype that has been indicated previously.

1. Vernier-Massouille G, (2008), Natural history of pediatric Crohn's disease: a population-based cohort study.

2. Gower-Rousseau C, (2009), The natural history of pediatric ulcerative colitis: a population-based cohort study.

3. Van Limbergen J, (2008), Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease.

  • Written by:

    P. Malmborg1, L. Grahnquist1, M. Ideström1,2, J. Björk3, R. Befrits3, J. Lindholm4, S. Montgomery3,5, H. Hildebrand1, 1Karolinska Institutet, Department of Women's and Children's Health, Stockholm, Sweden, 220 de Noviembre National Medical Center, ISSSTE, Gastroenterology, Mexico City, Mexico, 3Karolinska Institutet, Department of Medicine Solna, Stockholm, Sweden, 4Karolinska Institutet, Stockholm, Department of Oncology-Pathology, Stockholm, Sweden, 5Örebro University Hospital & Örebro University, Clinical Epidemiology and Biostatistics, Örebro, Sweden