Petra Riznik1, Luigina De Leo2, Jasmina Dolinsek3, Judit Gyimesi4, Martina Klemenak1, Berthold Koletzko5,6, Sibylle Koletzko7,8, Ilma Rita Korponay-Szabó4,9, Tomaz Krencnik1, Tarcisio Not2, Goran Palcevski10, Daniele Sblattero11, Matej Vogrincic12, Katharina Julia Werkstetter7, Jernej Dolinsek1,13. 1. Gastroenterology, Hepatology and Nutrition Unit, Department of Paediatrics, University Medical Centre Maribor, Maribor, Slovenia. 2. IRCCS Burlo Garofolo Trieste, Institute for Maternal and Child Health, Trieste, Italy. 3. Municipality of Maribor, Project Office, Maribor, Slovenia. 4. Heim Pál National Paediatric Institute, Coeliac Disease Centre, Budapest, Hungary. 5. Stiftung Kindergesundheit (Child Health Foundation), Munich, Germany. 6. Division of Metabolic Diseases and Nutritional, Medicine, Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany. 7. Division of Pediatric Gastroenterology and Hepatology, Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany. 8. Department of Pediatrics, Gastroenterology and Nutrition, School of Medicine Collegium Medicum University of Warmia and Mazury, Olsztyn, Poland. 9. University of Debrecen, Faculty of Medicine, Department of Paediatrics, Debrecen, Hungary. 10. University Hospital Rijeka, Department for Gastroenterology, Paediatric Clinic, Rijeka, Croatia. 11. University of Trieste, Trieste, Italy. 12. Department of Informatics, University Medical Centre Maribor. 13. Department of Paediatrics, Medical Faculty, University of Maribor, Maribor, Slovenia.
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.
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.