gms | German Medical Science

Background and state of (inter)national research: Inflammatory bowel diseases (IBD) include Crohn's disease (CD), Ulcerative colitis (UC), and unclassified inflammatory bowel disease (IBD-U). Incidence and prevalence are on the rise worldwide with a steep increase in pediatric onset IBD (PIBD). Initial symptoms are often recognized late, which reduces quality of life and may lead to more complications. The registry CEDATA-GPGE was founded in 2004 and collects initial and follow-up data on children and adolescents with IBD from German-speaking countries, currently Germany and Austria.

Research question and objective: The aim of this study was to analyze the diagnostic latency of PIBD, i.e. time between first symptoms and confirmed diagnosis, and to identify influencing factors.

Method or hypothesis: The analyses were based on data of the CEDATA-GPGE registry. The initial documentation (first three months) of pediatric patients with first diagnosis of CD or UC between 2014 and 2018 was analyzed. The diagnostic latency was determined by the median time in months between the date of first symptoms and the date of diagnosis. Furthermore, potential factors influencing diagnostic latency were identified using univariate Cox regression. Predictors were examined with the proportional hazards model, presented as hazard ratios (HR) with 95% confidence intervals. HR<1 represents factors associated with late diagnosis. The significance level was p<0.05.

Results: 456 patients were identified in the registry, thereof 258 patients (56.6%) with CD and 198 patients (43.4%) with UC. The median age of patients was 13.3 years, 43.6% were females. The median diagnostic latency was 4.1 month in CD and 2.4 month in UC. UC was associated with early diagnosis (HR=1.26; 95% CI: 1.05-1.50; p=0.01). For UC the symptom abdominal pain at night, video capsule endoscopy and the onset of first symptoms in 2017 and 2018 were associated with early diagnosis. The symptom abdominal pain was associated with delayed diagnosis. In CD, patients had a significantly higher chance of earlier diagnosis if the onset of first symptoms was in 2018.

Discussion: Time between initial presentation and a confirmed diagnosis varies for CD and UC. Only a few factors influencing the diagnostic latency have been identified. The sole presence of common symptoms such as abdominal pain leads to a delay in diagnosis. Abdominal pain at night is considered a “red flag” in the algorithm for pediatric functional abdominal pain and thus leads to a faster investigation in organic causes. In the presence of common symptoms such as abdominal pain, IBD should be considered.

Funding: Innovationsfonds/Versorgungsforschung