Despite the introduction of more specific ICD-10-CM codes for short bowel syndrome (SBS), new real-world U.S. claims data presented at ASPEN 2026 suggest that the majority of eligible patients may still be going uncounted.
In an analysis led by Alan Buchman, MD, MSPH, researchers found that only 28% of the expected SBS population was captured using the updated, syndrome-specific codes—raising concerns around widespread undercoding and misclassification in clinical practice.
Historically, SBS prevalence estimates have varied significantly due to reliance on broad diagnostic labels such as postoperative malabsorption, which fail to distinguish between patients with minimal resections and those with true intestinal failure. The introduction of SBS-specific codes was intended to improve clinical granularity, but inconsistent documentation, coder burden, and knowledge gaps appear to be limiting real-world adoption.
Beyond administrative accuracy, this gap has downstream implications for treatment selection, trial enrollment, and population-level outcomes tracking—particularly for therapies like teduglutide that require precise patient identification.
As uptake improves through clinician and coder education, accurate disease coding may prove essential to understanding the true burden—and treatment needs—of SBS across care settings.