Delayed Recognition of Tetralogy of Fallot in Adulthood: The Role of Social Determinants of Health in a Preventable Outcome

Authors

• Adam Alberts, University of LynchburgFollow

Specialty

ACHD

Advisor

SARAH BOLANDER

Abstract

Tetralogy of Fallot (TOF) is the most common form of cyanotic congenital heart disease. Without surgical repair, survival into adulthood is rare and is often accompanied by significant morbidity and mortality. Advances in prenatal diagnosis and early surgical intervention have shifted contemporary care toward lifelong surveillance and management of late complications. Despite these improvements, delayed diagnoses of unrepaired TOF still occur, most often in the presence of unaddressed social determinants of health (SDOH).

This manuscript describes an adult woman in her mid-forties with multiple adverse SDOH factors who remained misdiagnosed despite repeated interactions with the U.S. healthcare system. Barriers including language discordance, limited health literacy, and lack of consistent insurance which impeded access to appropriate evaluation and specialty care. The correct diagnosis of TOF was established only after she presented with advanced complications, including infective endocarditis. Subsequent evaluation demonstrated Eisenmenger syndrome, rendering surgical repair no longer feasible.

This case illustrates that SDOH do not merely contribute to loss to follow-up but can delay initial recognition of complex congenital heart disease, fundamentally altering disease trajectory and outcomes. Early identification of social risk factors and proactive intervention are essential to prevent avoidable progression from surgically correctable conditions to irreversible disease. Routine screening for SDOH and integration of responsive support systems should be considered a critical component of congenital heart disease care.

Recommended Citation

Alberts A. Delayed Recognition of Tetralogy of Fallot in Adulthood: The Role of Social Determinants of Health in a Preventable Outcome. University of Lynchburg DMSc Doctoral Project Assignment Repository. 2026; 8(1).