Psychosocial and Functional Outcomes Among Tetralogy of Fallot Survivors in the Congenital Heart Disease Project to Understand Lifelong Survivor Experience.

Creator(s)

• Benjamin M. Borron
• Andrew Jergel
• Caroline Shi
• Osamah Aldoss
• Charles E. Canter
• Mansi Gaitonde
• Gurumurthy Hiremath
• Jeffrey Jacobs
• Anitha John
• Bradley S. Marino
• Geetha Raghuveer, Children's Mercy HospitalFollow
• Lazaros K. Kochilas
• Matthew E. Oster

Document Type

Article

Publication Date

7-1-2026

Identifier

DOI: 10.1016/j.amjcard.2026.04.007

Abstract

As survival improves for adults with tetralogy of Fallot (TOF), long-term outcomes have taken on greater importance. We aimed to compare the long-term health, socioeconomic, and quality of life (QOL) outcomes between adult survivors and sibling controls. CHD PULSE is a cross-sectional survey from 2021 to 2023 across 11 Pediatric Cardiac Care Consortium centers; 3,133 adults with a history of CHD and 326 unaffected siblings completed surveys on health, socioeconomic, and QOL outcomes with the Patient-Reported Outcomes Measurement Information System (PROMIS). There were 337 TOF survivors, who were similar in age to controls (33.4 yrs vs 32.0 yrs, p = 0.076) but less likely to be female (56% vs 65%, p = 0.022). TOF survivors more frequently reported difficulty paying for medical care (31% vs 15%, p < 0.001), overnight hospitalizations (13% vs 7%, p = 0.015), and concern for future health (53% vs 38%, p < 0.001). They were less likely to have an associate's degree or higher (53% vs 74%, p < 0.001) and more likely to have health-related work limitations (43% vs 8%, p < 0.001) or be unemployed within the preceding year (20% vs 7% p < 0.001). However, PROMIS scores were favorable for both TOF survivors and the sibling comparison group. In conclusion, adults with TOF face persistent medical, education, and socioeconomic challenges relative to unaffected siblings. However, PROMIS quality of life scores demonstrate resiliency in the TOF survivors, with similar self-perceived QOL to their siblings.

Journal Title

The American journal of cardiology

Volume

270

First Page

44

Last Page

53

MeSH Keywords

Humans; Tetralogy of Fallot; Female; Quality of Life; Survivors; Cross-Sectional Studies; Adult; Male; Patient Reported Outcome Measures

PubMed ID

41999851

Keywords

adult congenital heart disease; long-term outcomes; patient-reported outcomes; quality of life; tetralogy of Fallot

Comments

Grants and funding

• R01 HL122392/HL/NHLBI NIH HHS/United States

Recommended Citation

Borron BM, Jergel A, Shi C, et al. Psychosocial and Functional Outcomes Among Tetralogy of Fallot Survivors in the Congenital Heart Disease Project to Understand Lifelong Survivor Experience. Am J Cardiol. 2026;270:44-53. doi:10.1016/j.amjcard.2026.04.007