| Summary: | Long-term follow-up data on Crohn's disease diagnosed before 20 years of age is limited. Mortality, intestinal malignancy and the need for resection were assessed in 224 patients with early-onset disease (96 males, 42.9%; 128 females, 57.1%). Mean follow-up was 12.2 years; more than 50% of patients were seen for over 10 years (almost 10% for over 25 years). Most patients were diagnosed from ages 13 to 19 years, rather than in childhood. Ileocolonic disease was most common (128 of 224; 57.1%), while upper tract involvement (42 of 224; 18.8%) was frequent. Complex disease with strictures (28.6%) or penetrating complications (46.4%) was common. To date, one patient with early-onset disease died from a drug overdose and one developed rectal cancer, but epithelial dysplasia has not been reported in endoscopic biopsies or resected intestine. One or more intestinal resections were required in 126 patients (56.3%; 58 males and 68 females). More than one resection was needed in 52 patients (23.2%). The mean time from diagnosis to first resection was 4.2 years and from first to second resection was 6.6 years, with most resections required in the first two years. Most patients who needed one or more resections had ileocolonic disease and had complex stricturing or penetrating disease. Information on long-term follow-up of early-onset Crohn's disease is crucial to avoid the direct extrapolation of adult data to children and adolescents.
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