ABSTRACT
Background and Aims: Substantial practice variation exists in both the diagnostic criteria for and the post-diagnosis monitoring of celiac disease (CeD). Differences include standards for serological diagnosis, endoscopic practices, models of care, and long-term clinical monitoring, all confounded by the COVID-19 pandemic. With the exponential rise of gluten-related disorders, revised ESPGHAN guidelines and new healthcare barriers, it is helpful to explore practice patterns to inform updates to clinical guidelines and future research endeavors. The purpose of this survey was to understand the expertise and practice parameters of pediatric gastroenterology (GI) clinicians across North America for the diagnosis and management of children with celiac disease. Method(s): A 23-item survey designed by a working committee of the NASPGHAN Celiac Disease Special Interest Group was distributed electronically to NASPGHAN members, including attending physicians, fellows, and advanced practice providers from September to December 2021. Four themes were explored: 1) screening and diagnosis;2) monitoring;3) impact of the COVID-19 pandemic;and 4) education and training. The implementaion of the ESPGHAN non-biopsy serologic diagnosis (based on the 2020 guidelines: tissue transglutaminase IgA (TTG-IgA) 10x upper limit of normal and a second sample with a positive endomysial antibody) by providers was explored. Descriptive statistics were tabulated by region, clinical role and those who identified as working at a celiac center. Result(s): A total of 284 surveys were completed with a response rate of 11.1% (264/2552). The majority of respondents were from the United States (89%, n=235) and Canada (8%, n=22) with 2% (n=5) from Mexico. Serology-based diagnosis as per ESPGHAN 2020 guidelines was accepted by 54.5% (n=12/22) of Canadian respondents and 39.6% (n=93/235) from the U.S (p=0.17). Since the COVID-19 pandemic, 36% of respondents have increased their application of non-biopsy diagnosis. Canadian respondents reported offering the ESPGHAN non-biopsy approach to diagnosis more often during the COVID-19 pandemic (Canada 74% vs US 33%, <0.0001). A higher precentage of patients who lived in Canada (52%) with positive celiac serologies waited >1 month to be evaluated by GI than the US (30%);p=0.03. There was also a significant difference between access to endoscopy within a month between patients who lived in Canada and the US patients (Canada 77% >1 month, US 20% >1 month;p=<0.001). Investigations at follow-up which were completed most frequently by those who identified as working at a celiac center (n=108) included complete blood count, thyroid function tests, liver enzymes, iron profile, Vitamin D and TTG-IgA (Figure 1). Among these respondents, 49.1% (n=53/108) repeat family screening ranging every 1-5 years. Specialty training in CeD remains limited as only 25.7% (n=61/237) staff pediatric gastroenterologists had celiac-focused didactic lectures, and 23.3% (n=55/237) participated in a CeD specialty clinic during their fellowship. Conclusion(s): This survey revealed heterogeneity in current practices for the diagnosis and management of CeD in North America and the influence of the COVID-19 pandemic in increasing the use of the ESPGHAN no-biopsy approach to diagnosis. An education gap was identified for CeD in pediatric GI fellowship training. Further studies are needed to understand the impact of these variable practices and future research priorities and clinical guidelines should take this variation into consideration. (Figure Presented).