Abstract
There is increasing emphasis on early diagnosis and intervention in inflammatory bowel disease (IBD), in particular Crohn’s disease (CD). Early treatment with effective medications can prevent IBD progression towards complications, surgery and disability. We aimed to characterize diagnostic delay in IBD and assess if a prolonged delay in diagnosis is associated with disease complications. We utilized IBD Partners, a validated online cohort of IBD patients. A survey was developed assessing self-reported diagnostic delay (time from symptom onset to diagnosis) and perceived reasons for delay. We extracted data on demographics, disease characteristics, medications and clinical outcomes. The survey was distributed monthly for five months. Delayed diagnosis was defined a priori as more than 1 year or more than 2 years. Our primary outcome of interest was characterizing diagnostic delay comparing ulcerative colitis (UC) and CD. Our secondary outcome of interest was the impact of delayed diagnosis of CD on risk of complications defined as a composite endpoint of history of bowel resection, fistula, stricture, and/or abscess. We performed descriptive statistics and assessed delay in diagnosis using Chi-square tests. Multivariable logistic regression was performed to assess the association of delay and CD complications adjusting for biologic use and covariables that were significant in univariable analysis at the p<0.05 level. Adjusted odds ratios (aOR) with 95% confidence intervals (CI) are reported. 2,341 IBD patients were offered the delay in diagnosis survey and 1121 were completed. 757 (68%) IBD patients reported a delay in diagnosis and completed the module. 364 (32%) patients did not think there was a delay in their diagnosis and did not complete module. 484 (63.9%) reported a delay > 1 year and 364 (48.1%) reported a delay > 2 years (Table 1). CD patients were more likely than UC patients to report a delay of greater than 1 year (70% vs. 48% p<0.0001) or greater than 2 years (52.2% vs. 37% p = 0.0008). There was no significant difference in delay when stratifying by gender and race. Patients reported seeing a mean of 3.5 physicians before establishing an IBD diagnosis. An uncertain or wrong initial diagnosis by a primary care provider (58.2%) or a gastroenterologist (28.3%) were reported as the most common reason for delay (Figure 1). Adjusting for age at diagnosis, ileal disease location and biologic use, diagnostic delay of greater than 2 years was significantly associated with disease complications (aOR 1.71, 95% CI 1.01 – 2.91, p = 0.047). 68% of patients reported a delay in diagnosis of their IBD. Among CD patients, 70% reported a delay greater than one year. Diagnostic delay is significantly longer in patients with CD. Prolonged delay was associated with poor outcomes. Future studies are needed to identify ways to best mitigate diagnostic delay in IBD.
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