Study Authors

Kandavel, Prashanthi; Eder, Sally J.; Adler, Jeremy; and the ImproveCareNow Network Pediatric IBD Learning Health System

Study Background

Corticosteroids (or simply steroids) like prednisone are commonly used to treat Crohn’s disease and ulcerative colitis. This is because they have been available for decades, are widely available, and quickly reduce inflammation. However, steroids have a long list of side effects, some of which can be quite serious. Pediatricians have long recognized the harms of steroids, particularly to growing children. For this reason, reduction in steroid use was one of the first goals of the ImproveCareNow Network when it was initially founded in 2007.

Study Overview

In the years since the founding of the ImproveCareNow Network, the list of treatment options for inflammatory bowel disease has grown considerably. In 2007, biologic drugs such as infliximab (Remicade) and adalimumab (Humira) were relatively new, and were often reserved for children with aggressive disease where no other medicine worked. A lot has changed in the intervening years. There are more “steroid sparing therapies” available, and newer evidence and professional guidelines recommend using biologic medications earlier in the course of the disease, or as first-line therapy for many patients with features of aggressive disease.

We aimed to determine how much steroid use has changed over the years since the introduction of the ImproveCareNow Network Model Care Guidelines, and with wider availability of and expanded variety of biologic drugs.

We recognized that steroids are still used shortly after diagnosis as temporary therapy, either while awaiting medication approval by insurance policies, or while awaiting the onset of slow-acting medications. For this reason, we focused on steroid use beyond 120 days after diagnosis. This is the timeframe that the Model Care Guidelines focuses on, and is when there is the greatest opportunity to reduce steroid use. So this study focused on steroid medications used by patients more than 120 days after diagnosis.

Study Results - What does it all mean? 

Prior to the establishment of the ImproveCareNow Network, steroid use was widespread, but there were no large studies to determine how commonly they were used. We now have evidence to show how often steroids were used, and how that has changed over time. In 2007 at the founding of ICN, 28% of all children diagnosed with IBD received steroids at some point beyond 120 days after their diagnosis. Over the years, the percent of children with IBD receiving steroids steadily decreased to 12% by 2018. So fewer than half as many children are being exposed to the harmful effects of steroids in recent years.

The other important finding of this study was that in the beginning of the study time period, black / African American patients received steroids more commonly than white patients. This disparity gradually improved over the years, and steroid use decreased in black patients faster than it did in white patients. By 2018, the steroid use rate was nearly the same in both groups.

Minimizing steroid use is important. Steroids cause short-term side effects like acne, high blood pressure, high sugar levels, moodiness, poor sleep. Steroids can also cause serious lasting effects such as  weakening of the bones, and interferance with growth, which lead to shorter adult height. Another important finding of this study was the improvement in child height over the years of this study.

So, who is most likely to be on steroids after 120 days? People who were treated with aminosalicylate medicines (mesalamine, Pentasa, Delzicol, Lialda, sulfasalazine, Azulfadine), and those who took steroids in the first 120 days were at greater risk. The group of patients at lowest risk for being on steroids were those treated with anti-TNF medicines (infliximab, Remicade, Inflectra, adalimumab, Humira, etc.).

Study status

This study was published in 2021. You can locate it:

Prepared by: Jeremy Adler, MD, MSc

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 create and share parent-approved research summaries called ICN Research Explained

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