Posted by ImproveCareNow™ on December 10, 2024
Delayed diagnosis of inflammatory bowel disease (IBD) leads to prolonged symptoms and worse long-term outcomes. We sought to evaluate whether race, ethnicity, disease type, and social factors are associated with delayed diagnosis of pediatric IBD.
Why was this study done?
The purpose of this study was to evaluate the effect of racial, ethnic, social, and economic factors on diagnostic delay to provide timely and equitable diagnosis and care to all patients with pediatric IBD. A total of 869 participants from 22 ICN centers from across the United States took part in the study.
Study overview
We performed a cross-sectional study of newly diagnosed pediatric patients with IBD at 22 United States sites from 2019 to 2022. Parents/guardians reported race, ethnicity, time between symptom onset and diagnosis, and other social determinants of health. Through bivariate and multivariable analyses using generalized estimating equations, we evaluated associations between these factors and diagnosis time defined as ≤60 days, 61 to 180 days, 181 to 365 days, and >365 days.
Study limitations
One limitation was that our study centers may not be representative of pediatric IBD care centers in general and that enrolled participants may be different from unenrolled patients. This means that our findings may not apply to all pediatric IBD centers or all patients with pediatric IBD.
Additionally, approximately 14% of study participants did not provide complete data on health system distrust and/or health literacy on their original study survey, therefore they were not included in the primary data analysis. This could have potentially impacted the results of this study. In addition, self-reporting of the time to diagnosis may have introduced some inaccuracy, as it can be challenging for participants to recall past events precisely.
Finally, we conducted this study primarily during the COVID-19 pandemic, which may have altered processes and patterns of referrals and care. Ongoing studies in the post-pandemic period will be important.
What does this mean for patients, families, and clinicians?
Our study, reassuringly, demonstrated equitable diagnostic care across race, ethnicity, and a number of social risk factors. Interestingly, participants with two or more health conditions were more likely to have a longer time to diagnosis compared to those with no other health conditions. We speculate that this may be due to the attribution of IBD symptoms to other health conditions and/or limited bandwidth of patients with chronic conditions to seek additional medical care for new symptoms. Last, a novel study finding was the demonstration of greater diagnostic delays for children with a longer travel time to reach a pediatric IBD care center. Time to travel could be a possible surrogate for other social determinants of health. Future research should aim to further explore the drivers of this association and develop and test novel models of care delivery to improve access and timeliness of care to affected communities.
Study authors
McLaughlin JF, Linville T, Jester TW, Marciano TA, Lazare F, Dotson JL, Samson C, Niklinska-Schirtz B, Cabrera J, Leibowtiz I, Batra S, Ammoury R, Strople JA, Saeed S, Sandberg KC, Tung J, Verstraete SG, Cox RF, Na S, Steiner SJ, Ali SA, Israel EJ, Dorsey J, Adler J, Rekhtman Y, Egberg MD, Waduge ER, Savas J, Brensinger CM, Lewis JD, Kappelman MD
Study stats
This study was published in August 2024. You can locate it on our website and online in Clinical Gastroenterology and Hepatology
- Study citation: McLaughlin JF, Linville T, Jester TW, Marciano TA, Lazare F, Dotson JL, Samson C, Niklinska-Schirtz B, Cabrera J, Leibowtiz I, Batra S, Ammoury R, Strople JA, Saeed S, Sandberg KC, Tung J, Verstraete SG, Cox RF, Na S, Steiner SJ, Ali SA, Israel EJ, Dorsey J, Adler J, Rekhtman Y, Egberg MD, Waduge ER, Savas J, Brensinger CM, Lewis JD, Kappelman MD. Travel Time to Treating Center is Associated With Diagnostic Delay in Pediatric Inflammatory Bowel Disease. Clin Gastroenterol Hepatol. 2024 Aug 23:S1542-3565(24)00761-4. doi: 10.1016/j.cgh.2024.07.027. Epub ahead of print. PMID: 39181423.
- Study sharing: Copyright © 2024. Published by Elsevier Inc. Elsevier has partnered with Copyright Clearance Center's RightsLink service to offer a variety of options for reusing this content.