Behind the sharp fall in deaths, three decades of global data reveal uneven progress and a growing need for equitable pediatric IBD care.
Study: The shifting burden of early-onset inflammatory bowel disease: a global analysis. Image Credit: Marko Aliaksandr / Shutterstock
In a recent study published in the journal Pediatric Research, a group of researchers evaluated the global burden, temporal trends, and socioeconomic disparities of early-onset inflammatory bowel disease (EO-IBD) in children younger than 10 years using Global Burden of Disease (GBD) 2021 data.
Background
In 2021, more than 1,000 children worldwide were estimated to develop EO-IBD, a lifelong condition that can disrupt growth, education, and emotional well-being.
Although substantial progress has been made in treating the disease, its reported burden varies widely across countries and may reflect differences in healthcare access, diagnostic capacity, reporting practices, and socioeconomic development. EO-IBD affects children younger than 10 years and causes unique clinical and public health challenges that extend beyond medical care.
Understanding how its burden differs across regions and populations is essential for improving pediatric health services and reducing inequalities.
About the Study
The researchers analyzed modeled estimates from the GBD 2021 database, which provides standardized health estimates for 204 countries and territories between 1990 and 2021.
The study focused on GBD estimates for inflammatory bowel disease (IBD) among children younger than 10 years, rather than on individual records that identify age at diagnosis, to examine incidence, prevalence, mortality, and disability-adjusted life years in this age group.
The results included age-standardized incidence and death rates (ASIR and ASDR), together with separate comparisons by geographic region, country, and the broad age groups of 0-4 and 5-9 years.
Statistical analyses were carried out using R software, version 4.4.1, and included geospatial mapping and regression analyses of disease burden. Temporal trends were assessed using estimated annual percentage change across the full study period and segmented annual percentage changes across specific intervals, with corresponding 95% confidence intervals.
Disease rates were compared across age, sex, and Socio-demographic Index (SDI) categories, which are based on income per capita, educational attainment, and fertility among people aged 25 years or younger.
Frontier analysis compared observed age-standardized rates with a modeled minimum for each SDI level rather than directly measuring healthcare quality. Health inequalities were assessed using the Slope Inequality Index and Concentration Inequality Index.
Additionally, decomposition analysis showed that population growth, changes in age structure, and variations in epidemiological rates contributed to changes in disease burden. GBD estimates were reported with 95% uncertainty intervals, regression-based analyses used 95% confidence intervals, and statistical significance was defined at α = 0.05.
Study Results
Between 1990 and 2021, the global burden of EO-IBD showed contrasting trends. The estimated number of deaths dropped from 1,008.54 to 293.14, a decrease of approximately 71%. Simultaneously, the estimated number of new cases increased slightly from 1,172.63 to 1,322.58. The ASDR declined significantly from 0.083 to 0.022 per 100,000 children, whereas the ASIR was approximately 0.10 per 100,000 in both 1990 and 2021, indicating little net change across the full period.
The estimated annual percentage change was −4.15% for ASDR, with a 95% confidence interval of −4.29% to −4.00%, and −0.11% for ASIR, with a 95% confidence interval of −0.29% to 0.07%, indicating a marked decline in mortality but relatively stable incidence. The ASIR trend was not statistically significant because its confidence interval included zero.
The estimated number of prevalent cases increased from 2,659.1 to 3,037.9, whereas disability-adjusted life years declined by approximately 70%, consistent with fewer premature deaths and possibly improved disease management despite a growing number of children living with the condition.
Substantial variations were observed across SDI categories. In 2021, middle-SDI regions recorded the largest estimated number of deaths, while high-SDI regions recorded the lowest number of deaths despite reporting the greatest number of new cases.
The highest ASIR occurred in high-SDI regions, while the lowest ASIR was found in middle-SDI regions. The estimated percentage reduction in mortality was greatest in high-middle-SDI regions and smallest in low-SDI regions, although the low-SDI estimate was highly uncertain, highlighting unequal progress in reducing disease burden across different development levels.
Regional analyses demonstrated substantial geographic variation. Global death rates fell in numerous areas around the world, especially in East Asia, High-income Asia Pacific, and high-middle-SDI regions. In contrast, Eastern, Southern, and Western Sub-Saharan Africa experienced slower declines.
Incidence rates increased most prominently in East Asia, middle-SDI regions, and North Africa and the Middle East, whereas High-income North America, Western Europe, and high-SDI regions recorded declining incidence rates.
Across most regions, children aged 5-9 years had a higher incidence than children aged 0-4 years. Globally, the older group had lower mortality, although the age distribution of deaths varied geographically. However, using only two broad age groups prevented a definitive age-related trend from being established.
Sex-specific analyses also revealed regional variation, with males experiencing higher mortality and incidence in some regions, while females had higher mortality in several resource-limited settings and higher incidence across a broader range of regions.
Temporal trend analysis showed that mortality declined continuously, though the pace varied, with the fastest decline between 2018 and 2021. Incidence initially increased but began to decline after 2010.
In addition, the analysis of socioeconomic differences indicated that mortality became more concentrated in lower-SDI countries, while incidence remained concentrated in higher-SDI countries at both endpoints.
Decomposition analysis indicated that epidemiological changes drove most of the decline in estimated deaths, while demographic factors, particularly population growth, drove most of the increase in the number of incident cases. Frontier analysis showed wide cross-national differences in the gaps between observed and modeled frontier rates, but it did not directly establish their causes.
Study Limitations
Because the estimates came from heterogeneous national data sources, underdiagnosis, misclassification, and underreporting may have underestimated the burden in countries with limited surveillance.
The study also combined Crohn's disease and ulcerative colitis, used only two broad age groups, and lacked individual exposure and treatment data, precluding causal inference. It did not directly assess growth impairment, mental health, quality of life, or other long-term clinical outcomes associated with pediatric IBD.
Conclusion
The study showed that the global burden of EO-IBD has changed substantially over the past three decades. While mortality rates and disability-adjusted life years declined markedly, the estimated numbers of incident and prevalent cases rose globally, even though the global ASIR showed little net change, resulting in a growing population of children living with the disease.
The socioeconomic patterns suggest that possible inequalities in diagnosis, access to treatment, surveillance, and healthcare capacity may contribute to the observed regional differences.
The findings support strengthening pediatric care alongside targeted healthcare policies and improved disease monitoring, particularly in regions with limited diagnostic and surveillance capacity.
Further research is needed to understand why these global differences exist.
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