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

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.