Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE 2014-2018

The 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 the quality of life and may lead to an increased rate of complications. The aim of this study was to determine the diagnostic delay in PIBD and to identify potential influencing factors. Therefore, data from the German-Austrian 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), and 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 (p=0.01). UC was associated with earlier diagnosis than CD (p<0.001). Only a few factors influencing the diagnostic delay have been verified, e.g., abdominal pain at night and if video capsule endoscopy was performed. 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.

Automated summary

The incidence and prevalence of pediatric-onset inflammatory bowel disease (PIBD) are increasing globally. This study found that the diagnostic delay for PIBD is higher in Crohn's disease (CD) compared to ulcerative colitis (UC), and factors such as abdominal pain at night and video capsule endoscopy may influence the delay. Participating centers have improved the diagnostic delay over the years, but awareness for common symptoms like abdominal pain still needs to be high.