More than 100,000 young people in the US live with inflammatory bowel disease

A CDC-funded study reveals a growing prevalence of inflammatory bowel disease in Americans under 20, among the highest rates in the world.

A recent study published in Gastroenterology estimated the prevalence of pediatric inflammatory bowel disease (IBD) in the United States (U.S.) by analyzing data from multiple insurance sources.

The researchers provided detailed information on disease distribution by age, sex, region, and race, highlighting the disparities in medical access and informing health policies better to address this significant and increasing public health issue.

Background

Inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis, are chronic conditions characterized by gastrointestinal inflammation. While traditionally considered rare in children, the prevalence of pediatric IBD has been increasing, especially in high-income regions such as North America. Children with IBD often experience more extensive disease and aggressive progression compared to adults.

Despite growing global awareness, comprehensive data on pediatric IBD prevalence in the U.S. remains sparse. Previous studies have revealed higher rates of pediatric IBD in the northeastern states and among certain racial groups, especially White individuals, but have provided limited insight into broader population-level trends.

Geographic and racial disparities further complicate our understanding of the prevalence and trends of pediatric IBD, emphasizing the need for detailed epidemiological research and assessment of prevalence across different demographic and socioeconomic groups. Addressing these gaps is essential to understanding disease burden, identifying underlying factors, and improving healthcare strategies for the vulnerable pediatric population.

About the study

The present study pooled data from two commercial insurance datasets and five state Medicaid programs to estimate pediatric IBD prevalence across the U.S. Data sources included de-identified records from Optum’s Clinformatics Data Mart, the Healthcare Integrated Research Database from Carelon Research, and Medicaid records from New York, Florida, Pennsylvania, California, and Ohio.

The study included children under 20 years of age with at least four years of continuous insurance coverage. A validated algorithm combining diagnostic and prescription records was used to identify IBD cases. The study defined IBD as requiring at least two physician diagnoses or one diagnosis with an IBD-specific medication prescription.

Furthermore, age- and sex-specific prevalence rates were computed for each dataset and adjusted to match the 2020 U.S. census data. Additionally, sensitivity analyses accounted for potential discrepancies in Medicaid enrollment trends.

The researchers used direct standardization techniques to produce nationally representative prevalence estimates. They also stratified the data by age, sex, race, ethnicity, and geographic region. To assess temporal changes, they compared prevalence trends from 2011 to 2020, with statistical adjustments accounting for variability in data collection methods across datasets.

The analysis also leveraged claims for physician visits, hospitalizations, procedures, and prescriptions to ensure comprehensive case identification. While the data provided robust population coverage, uninsured individuals were not included, which the researchers stated could be a potential source of underestimation.

Results

The study found that pediatric IBD affects over 100,000 children in the United States, with an estimated prevalence of 122 per 100,000 for all IBD cases. Among these, Crohn’s disease accounted for 71 per 100,000, while ulcerative colitis accounted for 44 per 100,000.

The prevalence was found to increase with age and was higher in males for Crohn’s disease but not ulcerative colitis. The disease was most common among White children (145 per 100,000), followed by Black (91 per 100,000), Hispanic (88 per 100,000), and Asian children (52 per 100,000). Additionally, the regional analysis revealed a higher prevalence in the northeastern states than in other areas.

Furthermore, the temporal trends indicated a steady rise in IBD prevalence from 2011 to 2020, which aligned with broader global patterns. The study also highlighted differences in Crohn’s disease to ulcerative colitis ratios, with higher ratios in White and Asian children compared to Black and Hispanic populations.

Geographic and racial disparities observed in the data implicated underlying factors such as environmental exposures, healthcare access, and diagnostic practices. Moreover, despite comprehensive coverage, there were various limitations to the study, including the absence of uninsured populations and potential misclassification in administrative data.

Nevertheless, these findings established the growing burden of pediatric IBD in the U.S., emphasizing its public health significance. They also provided critical data to inform resource allocation and suggested the need for further research into environmental and genetic contributors to observed disparities.

Conclusions

In summary, the study offered the most comprehensive estimate of pediatric IBD prevalence in the U.S. to date and highlighted significant racial, geographic, and temporal variations.

The findings emphasized the growing disease burden of pediatric IBD, particularly among certain populations and regions. The researchers also discussed the need for further investigation into the causes of these disparities. These results are vital for guiding healthcare policies and improving care for children with IBD.