A prospective cohort study assessing factors contributing to diagnostic delay in IBD, suggesting new strategies to improve outcomes.
Background Diagnostic delay in IBD is common. Why patients wait so long before seeking help is unclear. We hypothesise that direct to public calprotectin testing linked to definitive secondary care assessment for patients with positive results will reduce diagnostic delay. Methods To establish a baseline, prior to direct-to-public stool testing pilot, we undertook a prospective cohort study using patient reported outcomes to define time to IBD diagnosis and the demographic, disease-related and psychological factors associated with a delay. Delay was defined as greater than a year between symptom onset and secondary care contact and included time from symptom onset to first primary care contact (patient delay), first primary care contact to referral (primary care delay) and referral to diagnosis (secondary care delay). Depression, anxiety and fatigue were assessed using the Patient Health Questionnaire-8, General Anxiety Disorder-7 and IBD-fatigue respectively. A word cloud was generated from 185 responses to: “What, if anything, caused a delay in your IBD diagnosis?”. We used backwards stepwise regression to determine which factors to include in our final models. Results We included 192 patients (92 female, mean age 45 yrs) diagnosed with IBD between June 2024 and September 2025. The median [IQR] interval between diagnosis and survey completion was 22 [10-58] days. 34% (49/144) and 58% (28/48) patients experienced delay to diagnosis of ulcerative colitis (UC) or IBD unclassified and Crohn’s disease (CD) respectively. The largest component of overall delay was patient delay (Fig 1). Factors associated with overall delay were CD diagnosis (0.23 = p0.004), male sex (-0.15 p = 0.031), symptoms of IBS (0.17 p = 0.035) and embarrassment (0.19 p = 0.011). Within disease models, a history of IBS was associated with delay in CD and embarrassment in UC. PHQ-8 depression scores were associated with increased risk of diagnostic delay (p = 0.04), but this factor was not selected for the final model by the backwards regression process. Patient-reported symptom duration prior to referral was significantly longer than that captured in primary care referral letters (median difference 4.8 weeks p < 0.001). The prominence of GP in our word-cloud (Fig2) was due to positive (24) and negative (37) comments related to GP services, as well as reluctance to go to the GP (41). Conclusion Using patient reported symptom duration, more than a third of people living with IBD experience a delay to diagnosis of more than a year. Male sex, embarrassment and a history of IBS were associated with delay to diagnosis. Novel strategies to reduce the time to diagnosis of IBD, including direct-to-public stool testing, may help overcome embarrassment and reduce patient-related delay Reference: 1. Walker, GJ, Lin, S, Chanchlani, N, et al. Quality improvement project identifies factors associated with delay in IBD diagnosis. Aliment Pharmacol Ther. 2020; 52: 471– 480. https://doi.org/10.1111/apt.15885 2. Jayasooriya, N, Baillie, S, Blackwell, J, Bottle, A, Petersen, I, Creese, H, et al., POP-IBD study group. Systematic review with meta-analysis: Time to diagnosis and the impact of delayed diagnosis on clinical outcomes in inflammatory bowel disease. Aliment Pharmacol Ther. 2023; 57: 635– 652. https://doi.org/10.1111/apt.17370 Conflict of interest: Dr. Smith, Rebecca: No conflict of interest Cairnes, Vida: No conflict of interest Bishara, Maria: No conflict of interest Roberts, Christopher: Funding of research: Nova Ltd, Open Targets Odeh, Safwat: No conflict of interest Vine, Jordan: No conflict of interest Nice, Rachel: No conflict of interest Hodges, Phoebe: No conflict of interest Badrulhisham, Fakhirah: No conflict of interest Bewshea, Claire: No conflict of interest McDonald, Tim: No conflict of interest Pollok, Richard: I have no potential Conflict of Interest in the past 3 years including grants, honoraria, shares, paid positions, advisory boards, personal fees or non-financial support Rimmer, Peter: I have received research funding from F. Hoffman La Roche. I have received educational grants from Abbvie and Johnson & Johnson. I have received speaker fees from Abbvie, Ferring, Johnson & Johnson and Takeda. Appleby, Richard: No conflict of interest Kennedy, Nicholas Alexander: Grant: Dr Kennedy’s department has received research funding from AbbVie, Biogen, Celgene, Celtrion, Galapagos, MSD, Napp, Pfizer, Pharmacosmos, Roche and Takeda Personal Fees: Dr Kennedy has served as a speaker and/or advisory board member for AbbVie, Amgen, BMS, Falk, Ferring, Galapagos, Janssen, Mylan, Pharmacosmos, Sandoz, Takeda and Tillotts Non-financial Support: Dr Kennedy has had support to attend meetings from AbbVie, Falk, Janssen and Tillotts Goodhand, James Ross: No conflict of interest Ahmad, Tariq: Tariq Ahmad reports grants, personal fees and non-financial support from F. Hoffmann-La Roche AG, Biogen Inc, Abbvie, Janssen, Celltrion Healthcare, Galapagos NV, Immundiagnostik, Takeda, ARENA, Gilead, Adcock Ingram Healthcare, Pfizer, Genentech, Tillotts.
No takes yet. Share an insight, caveat, or question.
Smith et al. (2026) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: