Diagnostic Delays in Children with Coeliac Disease in the Central European Region

OBJECTIVES: Coeliac disease (CD) is a systemic autoimmune disorder affecting about 1% of the population. Many patients remain undiagnosed or are diagnosed with substantial delay. We assessed diagnostic delays in symptomatic CD children in Central Europe (CE). METHODS: Paediatric gastroenterologists in five CE countries retrospectively reported data of their patients diagnosed in 2016. Age at first CD related symptom(s), first visit to paediatric gastroenterologist and confirmed diagnosis were used to determine diagnostic delays. RESULTS: Data from 393 children (65% female, median age 7 years, range 7m-18.5y) from Croatia, Hungary, Germany, Italy and Slovenia were analysed. Median duration from first symptom(s) to visit to paediatric gastroenterologist was 5 months (range 0-10y; preschool 4m, school-aged 5m), and further duration until final diagnosis was 1 month (range 0-5y) with significant regional differences (p < 0.001). Median diagnostic delay was 6 months (range 0-10y; preschool 5m, school-aged 7m). Type of clinical presentation had little, however significant effect on delays. Reduced body mass in delays longer than 3 years compared to delays shorter than 1 year was found (z-score -0.93 vs -0.39, p < 0.05). CONCLUSIONS: Time from first symptoms to CD diagnosis in children in five CE countries is slightly shorter compared to few other small paediatric studies, and significantly shorter than reported for adults. Nevertheless, delays of more than 3 years in 6.6% of children are worrisome. Raising awareness about the variable symptoms and implementation of reliable diagnostic tools will further reduce diagnostic delays.