Does Clinical Nihilism affect the diagnostic approach for patients with undiagnosed adult coeliac disease? A UK Multicentre study

Abstract

AbstractBackgroundAdult coeliac disease (CD) has delays in diagnosis but the reasons for this have not been explored.MethodsGroup 1) Time from primary care presentation to diagnostic endoscopy was prospectively quantified in 151 adult patients with a positive endomysial antibody test and compared with the diagnostic pathway of 92 adult patients with suspected inflammatory bowel disease (IBD). Group 2) Across 4 hospitals over a 3-month period, duodenal biopsy reports for suspected CD were reviewed (n=1423). Group 3) 50 gastroenterologists completed questionnaires concerning their viewpoints on CD.ResultsGroup 1) Suspected coeliac patients waited significantly longer for diagnostic endoscopy following referral (48.5 [28-89] days) than suspected IBD patients (34.5 [18-70] days; p=0.003). Group 2) Of the 1423 patients that underwent diagnostic endoscopy for possible CD, 40.0% met the guidelines to take at least 4 biopsies. Diagnosis of CD was more likely if these guidelines were followed (10.1% vs 4.6% p<0.0001). 12.4% of newly diagnosed CD patients had at least 1 non-diagnostic gastroscopy in the 5 years prior to diagnosis. Group 3) 32.0% (16) of gastroenterologists failed to identify that CD has greater prevalence in adults than IBD. Moreover, 36.0% (18) of gastroenterologists felt that doctors were not required for the management of CD.ConclusionProlonged waiting times for endoscopy and inadequacies in biopsy technique suggest clinical inertia towards CD. This is exemplified by the nihilistic approach to the condition demonstrated in our qualitative data. This is the first study to demonstrate clinical inertia towards CD.Main messagesCD patients face greater delays at all wait intervals from referral to diagnostic endoscopy compared to inflammatory bowel disease (IBD) patients.The majority of endoscopists do not follow guidelines for diagnostic endoscopy for CD. This reduced diagnosis rates by over 50%.Questionnaire findings presented a nihilistic attitude towards CD alone and in comparison to IBD.This is the first study to fully represent how clinical inertia towards CD directly leads to increased diagnostic delay and likely missed diagnoses.What is already known on the subjectDiagnostic delay is a key issue facing modern management of coeliac disease (CD) whilst only 1 in 4 cases are estimated to be diagnosed.Delayed diagnosis of CD is associated with an increased risk of complications from the disease and a worse quality of life.