Patients’ views and experiences of delayed diagnosis of inflammatory bowel disease: a qualitative study

Cross, Eleanor; Prior, James A; Farmer, Adam D; Saunders, Benjamin

Abstract

Diagnosing inflammatory bowel disease (IBD) can be challenging and patients have been found to experience significant diagnostic delay, which can lead to poorer clinical outcomes. The reasons for this delay are not fully understood, and exploring patients' perspectives can offer important insights. To explore the views and experiences of patients who self-report a delay in IBD diagnosis.. Qualitative methodology, using semi-structured interviews. Participants were recruited via social media and a national IBD charity. Interviews were conducted by telephone. Data were analysed using thematic analysis and drawing on the constant comparison method. Sixteen interviews were carried out. Ten participants were female; six male, aged 20-65. Four main themes were identified: patient factors contributing to delay; primary care factors contributing to delay; systemic factors contributing to delay; and perceived consequences of delayed diagnosis. Participants reported initially not seeking help due to embarrassment or normalising their symptoms. Having consulted, participants reported further delay in receiving a diagnosis due to their perception that GPs had either mislabelled symptoms, expressed uncertainty or not taken symptoms seriously. Systemic factors, including lack of access to test results and communication issues across primary and secondary care, were also cited as contributing to delayed diagnosis. Several participants felt that their delayed diagnosis led to poorer clinical outcomes. These findings can support patients and GPs in their conversations about symptoms that may indicate IBD, and potentially contribute to reducing diagnostic delay, as well as informing future primary care interventions. [Abstract copyright: Copyright © 2023, The Authors.]

• Journal Article Type: Article
• Acceptance Date: Aug 3, 2023
• Online Publication Date: Aug 7, 2023
• Publication Date: 2023-12
• Deposit Date: Sep 7, 2023
• Journal: BJGP Open
• Print ISSN: 2398-3795
• Publisher: Royal College of General Practitioners
• Peer Reviewed: Peer Reviewed
• Pages: BJGPO.2023.0070
• DOI: https://doi.org/10.3399/BJGPO.2023.0070
• Keywords: diagnosis, general practice, qualitative research, Inflammatory Bowel Disease, primary care