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Diagnostic delay in children with inflammatory bowel disease in the German-Austrian patient registry CEDATA-GPGE
Maren Leiz1, Melanie Knorr2, Kilson Moon2
1Institute for Community Medicine, University Medicine, Greifswald, Germany. maren.leiz@jade-hs.de.
Insights
Diagnosing pediatric inflammatory bowel disease (PIBD) takes longer for Crohn's disease (CD) than Ulcerative colitis (UC). Increased awareness of common symptoms like abdominal pain is crucial for earlier PIBD diagnosis.
Area of Science:
- Pediatric Gastroenterology
- Inflammatory Bowel Disease Research
- Clinical Epidemiology
Background:
- Pediatric-onset inflammatory bowel disease (PIBD) incidence is increasing globally.
- Delayed diagnosis of PIBD negatively impacts quality of life and increases complication rates.
Purpose of the Study:
- To investigate the diagnostic delay in pediatric patients with inflammatory bowel disease (PIBD).
- To identify factors that influence the time to diagnosis in PIBD.
Main Methods:
- Analysis of data from the German-Austrian patient registry CEDATA-GPGE (2014-2018).
- Inclusion of 456 children and adolescents diagnosed with PIBD, categorized into Crohn's disease (CD) and Ulcerative colitis (UC).
Main Results:
- Median diagnostic delay was 4.1 months for CD and 2.4 months for UC (p=0.01), with UC diagnosed significantly earlier (p<0.001).
- Factors like nighttime abdominal pain and video capsule endoscopy use were associated with diagnostic delay.
- Diagnostic delay showed improvement over time in participating centers.
Conclusions:
- Ulcerative colitis (UC) in children has a shorter diagnostic delay compared to Crohn's disease (CD).
- Continued efforts to raise awareness for common PIBD symptoms, such as abdominal pain, are necessary for timely diagnosis.
Abstract:
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.
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