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

Abstract

BackgroundDiagnosing inflammatory bowel disease (IBD) can be challenging. 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.AimTo explore the views and experiences of patients who self-report a delay in IBD diagnosis.Design & settingQualitative methodology using semi-structured interviews. Participants were recruited via social media and a national IBD charity.MethodInterviews were conducted by telephone between December 2018 and February 2019. Data were analysed using thematic analysis and drawing on the constant comparison method.ResultsSixteen interviews were carried out. Ten participants were female and six were male; participants were aged 20–65 years. 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.ConclusionThese 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.