Barriers to implementing the revised ESPGHAN guidelines for coeliac disease in children: a cross-sectional survey of coeliac screen reporting in laboratories in England.

Background: European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines for diagnosing paediatric coeliac disease (CD) were revised in 2012. This enabled serological diagnosis in a selective group of symptomatic children using anti-tissue transglutaminase (anti-tTG) titre, antiendomysial antibodies (EMA) and HLA DQ2/DQ8 status. However, observing variations in the availability of serological tests for CD within our region, we conducted a countrywide survey to explore the diversity of these tests for all paediatric centres.

Methods: A nationwide telephone survey among biomedical scientists based in 139 National Health Service hospital trusts providing paediatric services in England was conducted by a single interviewer over a defined 3-week period. Respondents were asked about type of anti-tTG assay, the upper limit of normal (ULN) for anti-tTG titres, availability of EMA and reporting of IgA concentration.

Results: Responses were available from 134 (96.4%) laboratories. Anti-tTG titres are performed by 83/134 (62.6%) laboratories and 68/83 (81.4%) of those also offered EMA testing. Four different anti-tTG assays are available in England, but there are 10 different ULN values. The range for ULN varies widely from 4 to 30 IU/mL. Automatic reporting of total IgA concentration for a coeliac serology request occurs in only 24/83 laboratories.

Conclusions: Significant heterogeneity exists for serological tests for CD in particular anti-tTG titre reporting even within the same regions. This potentially affects the interpretation of the results by clinicians diagnosing CD and hence harbouring diagnostic inconsistencies in their practice. Standardisation especially of the anti-tTG assays and routine reporting of IgA concentration nationally should be strongly considered to support the current diagnostic process for CD.