Elsevier

The Journal of Pediatrics

Volume 158, Issue 3, March 2011, Pages 467-473.e2
The Journal of Pediatrics

Original Article
Childhood Onset Inflammatory Bowel Disease: Predictors of Delayed Diagnosis from the CEDATA German-Language Pediatric Inflammatory Bowel Disease Registry

https://doi.org/10.1016/j.jpeds.2010.09.014Get rights and content

Objectives

To examine predictors of delayed diagnosis of inflammatory bowel disease in children and adolescents.

Study design

A total of 2436 patients (age 0–18 years) with Crohn’s disease, ulcerative colitis, or unclassified colitis were included from 53 pediatric gastroenterologists. Predictors were examined with the proportional hazards model, presented as hazard ratios (HR) with 95% confidence intervals. HR < 1.0 represent factors associated with late diagnosis.

Results

Median time to diagnosis was 4 (2-8) months. Crohn’s disease (HR 0.62; 0.56–0.68), and within Crohn’s disease, ileal disease (HR 0.77, 95% confidence interval 0.67 to 0.89) were associated with delayed diagnosis. Chances for early diagnosis increased with increasing age (HR 1.07 per year of age; 1.06 to 1.08). There was also an effect by center (HR 0.63, 0.52 to 0.67), but not by sex or country (Austria vs Germany). Growth failure was more common in those cases with delayed diagnosis.

Conclusions

There is still concern about delays in the diagnosis of inflammatory bowel disease in the very young and in children with small bowel disease. Inequalities of care by region require further investigation.

Section snippets

Methods

The analysis was based on cases from the pediatric IBD registry, CEDATA-GPGE, as available in August 2009. This registry was founded in 2004 by pediatric gastroenterologists in Germany and Austria and is run by the Society of Pediatric Gastroenterology and Nutrition (GPGE) of these two countries. It includes children and adolescents with a confirmed diagnosis of Crohn’s disease, ulcerative colitis, or unclassified colitis before age 18 years, from specialized IBD centers across Germany and

Results

As of August 2009, 2604 children and adolescents were registered in CEDATA from 53 centres, excluding centers and cases from Saxony (n = 482). Of the CEDATA cases, 168 (6%) were excluded because of missing values for relevant variables (age, sex, type of disease, onset of symptoms, time of diagnosis). Overall, 2436 cases were available for analysis (Table I). For subanalyses in patients with Crohn’s disease, 1456 patients were included. Information on disease location was available for 1154

Discussion

Median time to diagnosis of IBD in CEDATA-GPGE compared favorably with most previously reported data. For those with a symptom onset between 2004 and 2007, 50% of all CEDATA children received the diagnosis within 4 months. Twenty-five percent, however, still wait 8 months or longer before the diagnosis is made and specific treatment can be initiated. Comparable data in the literature vary considerably. Many studies still report delays in the upper range, approaching 1 year for Crohn’s disease.10

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  • Cited by (0)

    Supported by Bild hilft e.V. EIN HERZ FÜR KINDER, Hamburg; Falk Foundation, Freiburg; SHS Gesellschaft für klinische Ernährung mbH, Heilbronn; Society of Pediatric Gastroenterology and Nutrition (GPGE). The authors declare no conflicts of interest.

    List of members of the CEDATA-GPGE Study Group available at www.jpeds.com (Appendix).

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