Long-term clinical outcomes and disease characteristics in children with inflammatory bowel disease

Abstract Background Paediatric inflammatory bowel disease (IBD) is a chronic relapsing disorder with increasing recognition worldwide, while integrated long-term data from Egypt remain limited. This study aimed to describe the clinical characteristics, disease phenotype, treatment patterns, and long-term outcomes of children with IBD managed at a tertiary paediatric referral centre in Egypt. Methods This retrospective single-centre cohort included children diagnosed with Crohn disease (CD), ulcerative colitis (UC), or IBD-unclassified (IBD-U) between January 2010 and December 2023. Demographic, clinical, laboratory, endoscopic, histopathological, therapeutic, and outcome data were extracted from medical records. Disease activity was assessed using the Paediatric Crohn’s Disease Activity Index (PCDAI) and Paediatric Ulcerative Colitis Activity Index (PUCAI). Results The cohort comprised 205 children (60.0% male): 106 (51.7%) had UC, 71 (34.6%) CD, and 28 (13.7%) IBD-U. Mean age at diagnosis was 6.4 ± 4.0 years, and mean diagnostic delay was 1.6 ± 1.4 years. Rectal bleeding was more frequent in UC than CD or IBD-U ( P < 0.001), while arthritis was more frequent in CD ( P = 0.002). Biologic therapy was used in 48 (23.4%) patients. At final follow-up, 135 (65.9%) were in remission, 60 (29.3%) had relapsing disease, and 10 (4.9%) had died; six deaths were attributed to sepsis. Conclusions Paediatric IBD in this cohort frequently presented at a young age with substantial diagnostic delay and extensive disease. Although most patients achieved remission, relapse, corticosteroid exposure, complications, and sepsis-related mortality remained important clinical concerns.