Understanding the patient’s experience of coeliac disease diagnosis: a qualitative interview study

Abstract

BackgroundCoeliac disease (CD) presents with non-specific symptoms, and delays to diagnosis are common. The traditional diagnostic pathway involves serological testing followed by endoscopic biopsy; however, the evidence is increasing about the effectiveness of a diagnosis without the need for a biopsy.AimTo understand the patient’s experience of being diagnosed with CD.Design and settingA qualitative study was conducted, which involved semi-structured interviews with adults diagnosed with CD living in the UK.MethodParticipants (n= 20) were purposefully sampled from 200 adults who had completed a diagnostic confidence survey. Interviews were conducted via video-conferencing software (Zoom), recorded, and transcribed verbatim. Data were analysed using reflexive thematic analysis.ResultsInterviewees faced pre-diagnostic uncertainty, presenting with non-specific symptoms that many experienced for several years and may have normalised. GPs often attributed their symptoms to alternative diagnoses, commonly, irritable bowel syndrome or anaemia. Investigations caused further uncertainty, with half of the interviewees unaware that their initial serology included a test for CD, and reporting long waits for endoscopy and challenges managing their diet around the procedure. Their uncertainty reduced once they received their biopsy results. Endoscopy was presented as the ‘gold standard’ for diagnosis and most interviewees believed that the procedure was necessary for diagnostic confidence and conviction in a lifelong gluten-free diet.ConclusionPatients experience uncertainty on the pathway to a diagnosis of CD. GPs could improve their experiences by being mindful of the possibility of CD and sharing information about serological testing. Policy and guidance should address the time to endoscopy and diet during diagnosis. If diagnosis without biopsy is adopted, then consideration should be given to clinical pathway implementation and communication approaches to reduce patient uncertainty.