This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.

Why was this study done?

For those newly diagnosed with IBD, figuring out if someone has ulcerative colitis or Crohn's disease can be tricky and not always straightforward. A diagnosis of IBD-unclassified ("IBD-u", previously known as Indeterminate Colitis) can be confusing to families and clinical professionals. It is really important to understand when and how often the diagnosis changes, especially if surgery is needed.

How was the study designed?

This study used information from approximately 1,100 pediatric patients in the ICN registry who had a change in diagnosis. It included youth under 21 years old who have IBD. Researchers also included other factors in the study that could impact a change in diagnosis, like age, sex, race, type of IBD, how much of the intestines were affected, and other health factors like nutrition and extra-intestinal manifestations (EIM).

What were the results?

We found that six out of every 100 youths with IBD received a change in diagnosis. The study also found that youths who were first diagnosed with IBD-u and those with longer follow-up times, were more likely to experience a diagnosis change. Other things like how much of the intestines were affected, nutrition, and extra-intestinal manifestations were not associated with a change in diagnosis.

What were the study limitations?

Youth who had surgery to remove their colon were not part of ImproveCareNow, so any changes in their diagnosis weren’t included.

What does this mean for patients, families and clinicians?

Before this study, we didn’t know how many youths with IBD had their diagnosis changed. 

Study authors

Harold Duarte, Adrienne StolfiCourtney McCallShehzad Saeed, Kelly Sandberg

Study stats

This study was published in March 2024. You can locate it on our website and online in Journal of Pediatric Gastroenterology and Nutrition

  • Study citation: Duarte HStolfi AMcCall CSaeed SSandberg KDiagnosis change in pediatric inflammatory bowel diseaseJ Pediatr Gastroenterol Nutr202478623-633doi:10.1002/jpn3.12120
  • Study sharing: This article is copyrighted by the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. Interested parties can request permission for reusing this content via the original article.

🔎 This ICN Research Explained was prepared by: Kelly Sandberg, MD, Dayton Children's Hospital and Lisa Pitch, ICN Parent/Family Advisory Council.
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 patients and parents/caregivers to create and share accessible summaries of completed research called ICN Research Explained
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