Diagnostic delay in children with inflammatory bowel disease: Results from the German-language patient registry CEDATA- GPGE 2014-2018

Abstract

Incidence and prevalence of pediatric onset inflammatory bowel disease (PIBD) are on the rise worldwide. Initial symptoms are often recognized with a delay, which reduces quality of life and may lead to an increased rate of complications. The aim of this study was to determine diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data of the German-language patient registry CEDATA-GPGE for children and adolescents with PIBD were analyzed for the period January 2014 to December 2018. There were 456 children identified in the data, thereof 258 children (57%) with Crohn’s disease (CD) and 198 children (43%) with Ulcerative colitis (UC). The median age was 13.3 years (interquartile range (IQR) = 10.9–15.0), 44% were females. The median diagnostic delay was 4.1 months (IQR = 2.1-7.0) in CD and 2.4 months (IQR = 1.2–5.1) in UC. UC was associated with earlier diagnosis than CD (hazard ratio = 1.26; 95% CI: 1.05–1.50; p = 0.01). Only a few factors influencing the diagnostic delay have been verified. Diagnostic delay improved over the years in participating centers, but the level of awareness needs to be high even in common symptoms like abdominal pain.