Abstract
Background:
The impact of modern management on life expectancy in familial adenomatous polyposis (FAP) remains sparsely reported, and recent treatment effects on disease-related causes of death are unclear. This study provides an updated assessment of life expectancy and mortality causes.
Methods:
Patients born after January 1935 were identified from a prospectively maintained registry with supplementary clinical record review. Retrospective life table analysis compared mortality with a matched UK Office for National Statistics population. Causes of death were analysed by era and stratified by presentation type – newly presenting patients versus screen-detected relatives identified through family screening.
Results:
Among 1917 patients with FAP, 364 deaths occurred versus 28 expected in the general population. Screen-detected relatives had consistently lower mortality, comparable to the general population (median SMR 0.66; SMR p
Colorectal disease remained the leading cause of death but declined significantly over time (64% pre-2001 to 31% post-2013;
p
p
p
Conclusion:
Recent FAP cohorts now have mortality comparable to the general population. Although colorectal mortality has declined, gastroduodenal and non-FAP-related causes have increased, underscoring the need for continued surveillance and broader long-term management strategies.