Sources of diagnostic delay for people with Crohn’s disease and ulcerative colitis: qualitative research study

Objective

An improved understanding of the causes and experience of diagnostic delay in Inflammatory Bowel Disease (IBD).

Methods

Framework analysis of semi-structured interviews with 20 adults with IBD.

Results

Participants’ prior knowledge of normal bowel function/IBD was limited. Symptoms were sometimes misattributed to mild/transient conditions or normalised until intolerable. Family pressures, work, education, mistrust of doctors, fear and embarrassment could exacerbate delays. Poor availability of face-to-face appointments deterred people from seeing a GP. Patients feared that by the time they got to see their GP, their symptoms would have resolved. Patients instead self-managed symptoms, but often regretted not seeking help earlier. Limited time in consultations, language barriers, embarrassment, and delays in test results subsequently delayed specialist referrals. GPs misattributed symptoms to other conditions due to atypical or non-specific presentations, leading to reduced trust in health systems. Patients complained of poor communication, delays in accessing test results, appointments, and onward referrals–all associated with clinical deterioration. GPs were sometimes unable to ‘fast-track’ patients into specialist care. Consultations and endoscopies were often difficult experiences for patients, especially for non-English speakers who are also less likely to receive information on mental health support and the practicalities of living with IBD.

Conclusions

The framework analysis demonstrates delay in the diagnosis of IBD at each stage of the patient journey.

Recommendations

Greater awareness of IBD amongst the general population would facilitate presentation to healthcare services through symptom recognition by individuals and community advice. Greater awareness in primary care would help ensure IBD is included in differential diagnosis. In secondary care, greater attention to the wider needs of patients is needed–beyond diagnosis and treatment. All clinicians should consider atypical presentations and the fluctuating nature of IBD. Diagnostic overshadowing is a significant risk–where other diagnoses are already in play the risk of delay is considerable.