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

Petra Riznik, Luigina De Leo, Jasmina Dolinsek, Judit Gyimesi, Martina Klemenak, Berthold Koletzko, Sibylle Koletzko, Ilma Rita Korponay-Szabó, Tomaz Krencnik, Tarcisio Not, Goran Palcevski, Daniele Sblattero, Matej Vogrincic, Katharina Julia Werkstetter, Jernej Dolinsek

Research output: Contribution to journalArticlepeer-review

Abstract

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 5 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% girls, median age 7 years, range 7 months to 18.5 years) from Croatia, Hungary, Germany, Italy, and Slovenia were analysed. Median duration from first symptom(s) to visit to paediatric gastroenterologist was 5 months (range 0-10 years; preschool 4 months, school-aged 5 months), and further duration until final diagnosis was 1 month (range 0-5 years) with significant regional differences (P < 0.001). Median diagnostic delay was 6 months (range 0-10 years; preschool 5 months, school-aged 7 months). Type of clinical presentation had little, however, significant effect on delays. Reduced body mass in delays longer than 3 years compared with 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 5 CE countries is slightly shorter compared with 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.

Original languageEnglish
Pages (from-to)443-448
Number of pages6
JournalJournal of Pediatric Gastroenterology and Nutrition
Volume69
Issue number4
DOIs
Publication statusPublished - Oct 1 2019

Keywords

  • Central Europe
  • children
  • coeliac disease
  • diagnostic delays

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Gastroenterology

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