Volume 72, Issue 4 pp. 552-557
Original Article: Gastroenterology: Celiac Disease

The Knowledge About Celiac Disease Among Healthcare Professionals and Patients in Central Europe

Petra Riznik

Petra Riznik

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

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Luigina De Leo

Luigina De Leo

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

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Jasmina Dolinsek

Corresponding Author

Jasmina Dolinsek

Municipality of Maribor, Project Office, Maribor, Slovenia

Address correspondence and reprint requests to Jernej Dolinsek, MD, PhD, Department of Paediatrics, Gastroenterology, Hepatology and Nutrition Unit, University Medical Centre Maribor, Ljubljanska 5, 2000 Maribor, Slovenia (e-mail: [email protected]).Search for more papers by this author
Judit Gyimesi

Judit Gyimesi

Heim Pál National Pediatric Institute, Coeliac Disease Centre, Budapest, Hungary

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Martina Klemenak

Martina Klemenak

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

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Berthold Koletzko

Berthold Koletzko

Stiftung Kindergesundheit (Child Health Foundation) at Dr. von Hauner Children's Hospital, Clinical Medical Centre, LMU, Munich, Germany

Dr. von Hauner Children's Hospital, Clinical Medical Centre, LMU, Munich, Germany

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Sibylle Koletzko

Sibylle Koletzko

Dr. von Hauner Children's Hospital, Clinical Medical Centre, LMU, Munich, Germany

Department of Pediatrics, Gastroenterology and Nutrition, School of Medicine Collegium Medicum University of Warmia and Mazury, Olsztyn, Poland

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Tunde Koltai

Tunde Koltai

Hungarian Celiac Society, Celiac Society, Budapest

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Ilma Rita Korponay-Szabó

Ilma Rita Korponay-Szabó

Heim Pál National Pediatric Institute, Coeliac Disease Centre, Budapest, Hungary

Department of Pediatrics, Faculty of Medicine, University of Debrecen, Debrecen, Hungary

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Tomaz Krencnik

Tomaz Krencnik

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

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Marina Milinovic

Marina Milinovic

Primorsko-Goranska County, Association of Celiac Patients, Rijeka, Croatia

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Tarcisio Not

Tarcisio Not

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

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Goran Palcevski

Goran Palcevski

Department for Gastroenterology, Pediatrics Clinic, University Hospital Rijeka, Rijeka, Croatia

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Daniele Sblattero

Daniele Sblattero

Department of Life Sciences, University of Trieste, Trieste, Italy

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Katharina Julia Werkstetter

Katharina Julia Werkstetter

Dr. von Hauner Children's Hospital, Clinical Medical Centre, LMU, Munich, Germany

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Jernej Dolinsek

Jernej Dolinsek

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

Department of Pediatrics, Medical Faculty, University of Maribor, Maribor, Slovenia

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First published: 16 December 2020
Citations: 25

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (www.jpgn.org).

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).

The authors report no conflicts of interest.

ABSTRACT

Objectives:

Celiac disease (CD) remains undiagnosed for a long time in many adult and pediatric patients. We assessed the knowledge about CD among healthcare professionals (HCPs) and CD patients in Central Europe (CE).

Methods:

HCPs and CD patients from 5 CE countries were asked to complete the web-based questionnaire about CD. The questions were divided into subsections on epidemiology, clinical presentation, diagnostics, treatment, and follow-up. Achieved scores of different specialists managing patients with CD were compared and regional differences in patients’ knowledge were analyzed.

Results:

Questionnaire was completed by 1381 HCPs and 2262 CD patients or their caregivers from Croatia, Hungary, Germany, Italy, and Slovenia. Mean score achieved by HCPs was 50.9%, and by CD patients 56.4%. Pediatric gastroenterologists scored the highest (69.4%; P < 0.001). There were significant differences in knowledge of patients from different CE regions with German participants scoring the highest (58.3%). Members of CD societies scored higher compared with nonmembers (mean score 58% vs 53.2%; P < 0.001) and patients diagnosed less than 5 years ago scored higher compared with those diagnosed more than 10 years ago (mean score 57.3% vs 54.6%; P < 0.001).

Conclusions:

The knowledge about CD among HCPs and CD patients is not satisfactory. Further awareness-raising and learning activities are needed to improve HCPs‘ knowledge and to minimize the number of unrecognized patients and unnecessary diagnostic delays. Patients should be better informed about their disease to reach higher compliance with the gluten-free diet.

The full text of this article hosted at iucr.org is unavailable due to technical difficulties.