Celiac disease diagnosis in clinical practice: ESPGHAN quality of care survey from 129 pediatric hospitals across 28 countries.

OBJECTIVES

European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) guidelines recommend first-line serology for suspected celiac disease (CeD), measuring only transglutaminase antibodies (TGA-immunoglobulin A [IgA]) plus total IgA. If TGA-IgA is ≥10 times the normal value, pediatric gastroenterologists (pedGI) may diagnose CeD without biopsies if autoantibodies against endomysial antibodies (EMA-IgA) are positive in a 2nd blood sample. This Quality-of-Care (QoC) project benchmarked diagnostic workup in clinical practice using ESPGHAN CeD guidelines as reference.

METHODS

A pseudonymized survey on CeD practices was sent to 141 hospitals within the ESPGHAN QoC-network in 28 countries.

RESULTS

Questionnaires were completed by 129/141 (91.5%) hospitals, with 121 (94%) having pedGI staff. As reasons conflicting with good QoC for CeD in their setting, responders assumed knowledge deficits among the public (57%), primary care providers (64%), non-GI physicians (16%), and pedGIs (0%). For initial testing, 66% of physicians ordered only total IgA and TGA-IgA, 7% did not use this combination, and 29% ordered additional serology (TGA-IgG, EMA, antibodies against deaminated gliadin peptide, or native gliadin). Regarding conflicting results for TGA-IgA and histopathology in IgA-sufficient children, 61% incorrectly classified negative TGA-IgA with Marsh 2 and 57% with Marsh 3 lesions as "potential CeD," while 49% excluded CeD in the case of villous atrophy and negative TGA-IgA. Routine practice did not align with the ESPGHAN recommendations regarding performance of duodenal biopsies (27%), EMA-testing (34%), and diagnosis of CeD in IgA-deficient children (32%).

CONCLUSIONS

We identified areas for improving QoC regarding both effectiveness and efficacy, in pediatric patients with suspected CeD, and consequently developed easy-to-use tools to improve guideline implementation.