ICN Research Explained: Race Differences in Initial Presentation, Early Treatment, and 1-year Outcomes of Pediatric Crohn's Disease

Posted by Michele Cho-Dorado on January 22, 2019

Study Authors

Jennifer L. Dotson, MD, MPH, Michele Cho, MD, Josh Bricker, PhD, Michael D. Kappelman, Md, MPH, Deen J. Chisolm, PhD, Gitit Tomer, MD, and Wallace V. Crandall, MD

Study Background

We know there are racial differences in access to and delivery of healthcare. This can negatively impact the quality of care that minority groups receive. Identifying health care differences can help doctors and other care givers to improve patient outcomes and help deliver better care. This study is important to ICN and the larger pediatric IBD community as ICN was founded to improve the health and health care of children with IBD. We were able to utilize the data contained within the ICN registry to study this topic.

Study Overview

The purpose of this study was to look at differences between Black and White children with Crohn's disease, specifically looking at differences in medical management and severity of disease. We studied data from 976 pediatric patients (Black=118 (12%), White=858 (88%), mean age = 13 years, 63% male) with Crohn's disease who were enrolled in ICN at 39 sites between Sept 2006 and Oct 2014. The main questions were:

Does medical management differ between Black and White children with Crohn's disease at diagnosis and 1 year after diagnosis?
Are Black children less likely than White children to be in remission (more likely to have active disease) 1 year after diagnosis?

Limitations of this study include the fact that data collected are from outpatient clinic visits only and do not take into account inpatient hospitalizations or surgeries. Some patients were unable to be included in the study due to lack of follow-up within the necessary time-frame. Also, racial variation within the ICN community may not perfectly reflect racial variation in the real world.

Study Results - What does it all mean?

In this study, we found that there were no differences in treatment between Black vs White children with Crohn's disease. When based on sPCDAI (short Pediatric Crohn's Disease Activity Index), which is a scoring tool used to assess disease severity, there was no significant difference in remission rate or disease activity between the two races (P=0.06). However, when based on Physician Global Assessment (PGA), which is another type of scoring system that doctors use to assess disease severity, Black children with Crohn's had more active disease compared to White Children (P=0.016). Black patients also had lab markers suggestive of more active disease. Taken altogether, our data suggest that Black patients may have an increase in disease activity during the 1st year of diagnosis, even though they received similar treatments. The reason for this is unclear but it might suggest that Black children with Crohn's have more severe disease.

Prepared by: Michele Cho-Dorado, MD and Jennifer Dotson, MD, MPH

Reviewed by: Parent Working Group Research Subcommittee

About ICN Research Explained: We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with the Parent Working Group Research Subcommittee to bring you a new series of parent-approved research summaries called “ICN Research Explained".

Access this study in ICN Publications >>

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