Celiac disease in North America: What is the current practice of pediatric gastroenterology providers?

Author:

Singh Arunjot12ORCID,Silvester Jocelyn34,Turner Justine5,Absah Imad6,Sparks Brandon A.7,Walsh Catharine M.8,Bracken Julia M.9,Stanisz Joanna10,Hajjat Temara11,Badalyan Vahe12,Chugh Ankur13,Hoffenberg Edward J.14,Dowhaniuk Jenna K.15

Affiliation:

1. Division of Gastroenterology, Hepatology and Nutrition Children's Hospital of Philadelphia Philadelphia Pennsylvania USA

2. Department of Pediatrics Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA

3. Celiac Research Program Harvard Medical School Boston Massachusetts USA

4. Department of Medicine Boston Children's Hospital Boston Massachusetts USA

5. Department of Pediatrics, Division of Gastroenterology and Nutrition University of Alberta Edmonton Alberta Canada

6. Division of Pediatric Gastroenterology and Hepatology Mayo Clinic Rochester Minnesota USA

7. Division of Pediatric Gastroenterology, Hepatology and Nutrition, Riley Hospital for Children Indiana University Indianapolis Indiana USA

8. Department of Paediatrics and the Wilson Centre, Division of Gastroenterology, Hepatology and Nutrition and the Research and Learning Institutes, The Hospital for Sick Children, Temerty Faculty of Medicine University of Toronto Toronto Ontario Canada

9. Division of Gastroenterology, Hepatology and Nutrition, Children's Mercy Kansas City University of Missouri Kansas City Kansas City Missouri USA

10. Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Eastern Ontario University of Ottawa Ottawa Ontario Canada

11. Division of Gastroenterology, Hepatology and Nutrition Cincinnati Children's Hospital Medical Center Cincinnati Ohio USA

12. Division of Gastroenterology, Hepatology and Nutrition, Children's National Hospital The George Washington University School of Medicine and Health Sciences Washington District of Columbia USA

13. Department of Pediatrics, Division of Pediatric Gastroenterology Medical College of Wisconsin/Children's Wisconsin Milwaukee Wisconsin USA

14. Department of Pediatrics, Digestive Health Institute University of Colorado Denver School of Medicine and Children's Hospital Aurora Colorado USA

15. Department of Pediatrics, Division of Gastroenterology and Nutrition, McMaster Children's Hospital McMaster University Hamilton Ontario Canada

Abstract

AbstractObjectivesWhile guidelines exist for the diagnosis and management of pediatric celiac disease (CeD), current practices in North America are not well‐described. This study aimed to explore current practice patterns to identify gaps and direct future clinical, training and research initiatives.MethodsA 23‐item survey designed by the Celiac Disease Special Interest Group was distributed electronically to its members. Questions explored four themes: (1) screening and diagnosis pre and post the coronavirus disease (COVID)‐19 pandemic, (2) treatment and monitoring, (3) family screening and transition of care, and (4) CeD focused training.ResultsThe survey response rate was 10.8% (278/2552). Most respondents were from the United States (89.9%, n = 250) and Canada (8.6%, n = 24). While endoscopy remained the gold standard, serology‐based diagnosis was accepted by 47.5% (132/278). In response to the COVID‐19 pandemic, 37.4% of providers changed their diagnostic practice. Barriers to care included: lack of insurance coverage for dietitians, wait times, and lack of CeD focused training. During fellowship 69.1% (192/278) reported no focused CeD training.ConclusionSurvey results revealed practice variation regarding the diagnosis and management of CeD in North America including a substantial proportion accepting non‐biopsy, serology‐based diagnosis, which increased during the COVID‐19 pandemic. Variations in screening, diagnosis, interval surveillance, and family screening were also identified. Dedicated CeD education in pediatric gastroenterology fellowship may be an opportunity for standardizing practice and advancing research. Future North American guidelines should take current care patterns into consideration and develop new initiatives to improve care of children with CeD.

Publisher

Wiley

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