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

Abstract

Background: Coeliac disease (CD) presents with non-specific symptoms and delays to diagnosis are common. The traditional diagnostic pathway involves serological testing then endoscopic biopsy; however, literature on the effectiveness of no biopsy diagnosis is increasing. Aim: To understand the patient experience of being diagnosed with CD. Design and Setting: Qualitative study involving semi-structured interviews with adults diagnosed with CD living in the UK. Method: Participants (n=20) were purposefully sampled from 200 adults who had completed a diagnostic confidence survey. Interviews were conducted via Zoom, recorded, and transcribed verbatim. Data were analysed using reflexive thematic analysis. Results: Interviewees faced pre-diagnostic uncertainty, presenting with non-specific symptoms that many experienced for several years and may have normalised. GPs often attributed symptoms to alternative diagnoses, commonly IBS or anaemia. Investigations caused further uncertainty, with half of interviewees unaware their initial serology included a test for CD, and reporting long waits for endoscopy and challenges managing diet around the procedure. Uncertainty reduced upon receipt of biopsy results. Endoscopy was presented as ‘gold standard’ for diagnosis and most interviewees felt the procedure necessary for diagnostic confidence and conviction in a lifelong gluten free diet. Conclusion: Patients experience uncertainty on the pathway to CD diagnosis. GPs could improve experiences by being mindful of the possibility of CD and sharing information on serological testing. Policy and guidance should address time to endoscopy and diet during diagnosis. If no biopsy diagnosis is adopted, consideration should be given to clinical pathway implementation and communication approaches to reduce patient uncertainty.