It is estimated that only one in four cases of coeliac disease (CD) are diagnosed in the UK, representing a significant undiagnosed burden. Delays in diagnosis can present in both primary and secondary care, international literature reports a mean delay range of 9.7-12.8 years. Delayed diagnosis of CD is correlated with increased risk of complications and a worse quality of life which improves substantially upon diagnosis, whilst earlier diagnosis is associated with lower standardised mortality ratios.
The aim of this UK multicentre study was to assess the degree of delay present in the diagnostic referral pathway for CD as well as determine concordance with biopsy guidelines. Additionally, clinician attitudes towards CD were explored in an attempt to characterise the factors influencing delay.
Primary care presentation to biopsy completion
Data was collected for 151 patients suspected of CD who registered a positive endomysial antibody (EMA) test in primary care and who were then referred for an endoscopy between April 2014-Sept 2015. For the control group, data was collected for 92 IBD patients. Time from referral to endoscopy was 48.5 days (range 28-89) for CD patients. This was significantly longer than the wait for suspected IBD patients (34.5 days; p=0.003). Longer delays to diagnosis correlated with a significantly increased Marsh Grade of duodenal biopsies. Of those seen within 4 weeks, 15.5% had normal-borderline histology, compared with 44.9% seen after 4 weeks (p=0.017).
Adherence to biopsy guidelines in detection of CD.
Endoscopy and histology reports for 1423 patients who had a duodenal biopsy for suspected CD between Nov 2012 and Jan 2013 in four UK hospitals were reviewed. Ninety seven (6.8%) of the patients reviewed were subsequently diagnosed with CD. Only 40% of the patients who underwent diagnostic endoscopy had the recommended number of biopsies taken (4). If guidelines to take at least 4 biopsy samples were followed, diagnosis of CD was more likely than if 3 or less biopsy samples were taken (10.1% vs 4.6% p<0.0001). 12.4% of patients had received at least 1 non-diagnostic gastroscopy in the 5 years prior to diagnosis. Gastroenterologists and nurse endoscopists were significantly more likely than surgeons to follow guidelines (41.5% vs 51.2% vs 18.2%; p<0.0001).
Gastroenterology clinicians perspective
A focus group consisting of a range of clinicians specialised in gastroenterology was used to formulate a questionnaire to assess clinician attitudes to CD, across the UK. The questionnaire was completed by 50 gastroenterology registrars and consultants between 2014-15. 64% of participants were registrars and 36% were consultants. 32% of gastroenterologists failed to identify that CD prevalence in adults was greater than IBD. 36% of gastroenterologists felt that doctors were not required for the management of CD, whilst 16% felt that a diagnosis of CD does not significantly impact patient quality of life. It was also noted that gastroenterologists felt that the management of CD was not academically challenging and was less difficult than the management of IBD.
This study demonstrates prolonged waiting times for endoscopy and inadequate biopsy technique, objectively suggesting medical inertia towards CD amongst secondary care clinicians. Questionnaire findings also presented an attitude of medical inertia towards CD alone and in comparison to IBD. This is the first study to fully represent how medical intertia towards CD directly leads to increasing diagnostic delay and likely missed diagnosis. These findings advocate the need to combat this through lower thresholds for investigation, greater adherence to biospsy guidelines and increased referral urgency to reduce overall diagnostic delay.