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

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

Journal of Pediatric Gastroenterology and Nutrition: June 18, 2019 - Volume Publish Ahead of Print - Issue - p
doi: 10.1097/MPG.0000000000002424
Original Article: Gastroenterology: PDF Only

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.

*University Medical Centre Maribor, Department of Paediatrics, Gastroenterology, Hepatology and Nutrition Unit, Maribor, Slovenia

IRCCS Burlo Garofolo Trieste, Institute for Maternal and Child Health, Trieste, Italy

Municipality of Maribor, Project Office, Maribor, Slovenia

§Heim Pál National Paediatric Institute, Coeliac Disease Centre, Budapest, Hungary

Stiftung Kindergesundheit (Child Health Foundation), Munich, Germany

||Division of Metabolic Diseases and Nutritional Medicine, Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany

**Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany: Department of Pediatrics, Gastroenterology and Nutrition, School of Medicine Collegium Medicum University of Warmia and Mazury, Olsztyn, Poland

††University of Debrecen, Faculty of Medicine, Department of Paediatrics, Debrecen, Hungary

‡‡University Hospital Rijeka, Department for Gastroenterology, Paediatric clinic, Rijeka, Croatia

§§University of Trieste, Trieste, Italy

¶¶University Medical Centre Maribor, Department of Informatics, Maribor, Slovenia

||||Medical Faculty, Department of Paediatrics, University of Maribor, Maribor, Slovenia.

Address correspondence and reprint requests to Jernej Dolinsek, MD, PhD, University Medical Centre Maribor, Department of Paediatrics, Gastroenterology, Hepatology and Nutrition Unit. Ljubljanska 5, 2000 Maribor, Slovenia (e-mail:

Received 15 February, 2019

Accepted 29 April, 2019

Conflicts of Interest and Source of Funding: Authors have no conflicts of interest to disclose.

The study was supported by the Interreg Central Europe CE-111 Focus in CD project. The collection of Hungarian data was also supported by the NKFI120392 and EFOP-3.6.1-16-2016-00022 grants, the collection of German data by Medical Faculty, Ludwig Maximilian University Munich and Bavarian State Ministry for Education, Culture, Science and Arts, and the collection of Slovenian data by Slovenian Research Agency (ARRS).

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,