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. 2025 Feb 4;19(2):jjaf017.
doi: 10.1093/ecco-jcc/jjaf017.

Prevalence, incidence, and mortality of inflammatory bowel disease in the Netherlands: development and external validation of machine learning models

Reinier C A van Linschoten  1   2   3 , Nikki van Leeuwen  3 , David van Klaveren  3 , Marieke J Pierik  4   5 , Rob Creemers  5   6 , Evelien M B Hendrix  4   5 , Jan A Hazelzet  3 , C Janneke van der Woude  2 , Rachel L West  1 , Desirée van Noord  1
Affiliations

Prevalence, incidence, and mortality of inflammatory bowel disease in the Netherlands: development and external validation of machine learning models

Reinier C A van Linschoten et al. J Crohns Colitis. .

Abstract

Background and aims: Large registries are promising tools to study the epidemiology of inflammatory bowel disease (IBD). We aimed to develop and validate machine learning models to identify IBD cases in administrative data, aiming to determine the prevalence, incidence, and mortality of IBD in the Netherlands.

Methods: We developed machine learning models for administrative data to identify IBD cases and classify them on subtype and incidence year. Models were developed in a population-based cohort and externally validated in a hospital cohort. Models were evaluated on Brier score, area under the receiver operating characteristic curve (AUC), calibration, and accuracy. The best models were used to determine the epidemiology of IBD in the Netherlands between 2013 and 2020.

Results: For identifying IBD cases the random forest model was best (AUC: 0.97, 95% CI [0.96; 0.97]). The gradient-boosted trees model for subtype was best (accuracy: 0.95, 95% CI [0.94; 0.95]) as was the random forest model for incidence year (0.88, 95% CI [0.86; 0.89]). The prevalence of IBD in the Netherlands was 577.6 (95% CI [566.7; 586.2]) per 100 000 on December 31, 2020, with varying prevalence across the Netherlands. Incidence of IBD was 20.1 (95% CI [18.0; 22.3]) per 100 000 in 2020 and stable over time. Mortality rates of IBD patients rose over time and were 11.6 (95% CI [10.5; 11.8]) per 1000 in 2020 as compared to 9.5 in the general population.

Conclusion: Inflammatory bowel disease cases can be accurately identified using administrative data. The prevalence of IBD in the Netherlands is increasing slower than expected, suggesting a trend towards the epidemiological stage of Prevalence Equilibrium.

Keywords: incidence; inflammatory bowel disease; machine learning; mortality; prevalence.

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Conflict of interest statement

M.J.P. has received consulting fees from Takeda, Janssen, Galapagos, and AbbVie; and payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Janssen. R.C. has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Galapagos. C.J.vd.W. has received research grants from ZonMW, Falk, and Pfizer; has received consulting fees from Janssen, Galapagos, and Pfizer; has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Ferring and AbbVie; and had leadership roles in the European Crohn’s and Colitis Organisation, United European Gastroenterology Council, and the Dutch Association for Gastroenterology. D.vN. has received consulting fees from Lilly, Janssen, Takeda, AbbVie, and Galapagos. R.L.W. has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Ferring, Pfizer, Galapagos, AbbVie and Janssen. All other authors have nothing to declare.

Figures

Figure 1.
Figure 1.
Patient selection for the (A) development and (B) validation cohorts.
Figure 2.
Figure 2.
Distribution of prevalent inflammatory bowel disease cases in the Netherlands on December 31, 2020.
Figure 3.
Figure 3.
Demographics of prevalent (A) Crohn’s disease and (B) ulcerative colitis cases in the Netherlands on December 31, 2020 with 95% confidence intervals.
Figure 4.
Figure 4.
Changes in the (A) prevalence per 100 000 persons, (B) incidence per 100 000 persons, (C) standardized mortality per 1000 inflammatory bowel disease (IBD) cases, and (D) incidence/mortality ratio of IBD, Crohn’s disease, and ulcerative colitis in the Netherlands between 2013 and 2020.
See this image and copyright information in PMC

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