Epidemiology of US patients with short bowel syndrome-associated intestinal failure: A claims database analysis

TL;DR

This study estimates the number of US patients with short bowel syndrome requiring parenteral support, finding a rise in prevalence from 2019 to 2021.

Contribution

The study uses updated ICD-10 codes to improve the accuracy of identifying patients with SBS-associated intestinal failure in claims data.

Findings

The estimated US prevalence of SBS-IF was 12,000 patients in 2021.

Prevalence increased by over 24% from 2019 to 2021.

A broader definition suggested up to 30,000 annual cases.

Abstract

After intestinal resection, patients with short bowel syndrome (SBS) have inadequate intestinal function, leading to malabsorption of nutrients and fluids, and in more extensive cases intestinal failure, requiring parenteral support (PS). Epidemiology analyses based on insurance claims have lacked diagnosis code specificity, leading to risks of misclassification during patient identification. The recent ICD-10 codes for SBS and intestinal failure (IF) could mitigate this. The objective of this claims-based study was to characterize the annual prevalence of patients with SBS dependent on PS, i.e. patients with SBS-associated IF (SBS-IF) from 2019 to 2021 in the USA.

We conducted a retrospective claims data analysis to identify patients with SBS-IF using the Komodo Healthcare Map™ database. Inclusion criteria were at least two insurance claims for both chronic and continuous nutrition, six months apart, a malabsorption diagnosis, and either gastrointestinal surgery or congenital bowel disorder. Annual prevalence estimates were calculated using diagnosis rates from the cohort projected to the US population by age and gender.

In 2021, estimated US point prevalence of SBS-IF was ∼12,000 individuals, corresponding to approximately 36/million population (overall), with stable sex (2/3 female) and age distributions across years. From 2019 to 2021, prevalence increased by > 24 %. Sensitivity analyses using a broader definition produced an upper bound approaching 30,000 individuals (higher per-million rate accordingly).

This claims-based algorithm requiring sustained PS plus clinical face-validity signals (malabsorption and relevant surgical/congenital history) yielded consistent, contemporary estimates of SBS-IF prevalence in the US, supporting downstream epidemiology and health-services analyses.

•SBS-IF epidemiology understanding was limited by lack of specific diagnosis codes.•A claims data analysis identified patients with SBS-IF using recent ICD-10 codes.•US prevalence was 12,000 patients in 2021.•Prevalence increased by > 24 % from 2019 to 2021.•A relaxed patient definition showed an up to 30,000 annual cases.

SBS-IF epidemiology understanding was limited by lack of specific diagnosis codes.

A claims data analysis identified patients with SBS-IF using recent ICD-10 codes.

US prevalence was 12,000 patients in 2021.

Prevalence increased by > 24 % from 2019 to 2021.

A relaxed patient definition showed an up to 30,000 annual cases.

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