Patient-Reported Outcomes After Tetralogy of Fallot Repair

Quick Takes

  • Quality of life (QOL) measures for adolescents and adults with repaired tetralogy of Fallot (TOF) are overall good and consistent across different age groups.
  • As opposed to QOL, metrics related to perceived health status are worse with increasing age, particularly among individuals >40 years of age. Specific measures impacted were related to mobility and pain/discomfort.
  • Efforts aimed at improving QOL of individuals with TOF should also include both cardiac indices as well as sociodemographic factors.

Study Questions:

What are patient-reported outcomes (PROs) related to quality of life (QOL) and health status (HS) in adolescents and adults with repaired tetralogy of Fallot (TOF), and what patient factors are associated with these PROs?


A cross-sectional observational trial was performed using a large multinational registry of adolescents and adults with repaired TOF and ≥ moderate pulmonary valve regurgitation. PROs included a QOL linear analogue scale (QOL-LAS) and health status visual analogue scale (HS-VAS). HS was also assessed using the Short Form Health Status survey (SF-12v2®). Scores were classified according to age cohorts: <18, 18-25, 26-40, and >40 years.


A total of 607 patients (46.3% female, median age 28.5 years) were studied. Median QOL-LAS scores (0-100) were similar across age cohorts (85, 80, 80, 80; p = 0.056). Median HS-VAS scores (0-100) were lowest for the oldest cohort (77) compared with the three younger cohorts (85, 80, 80) (p = 0.004). In the older cohorts, there were increased reports of poor mobility and pain/discomfort. Factors associated with superior PROs on multivariable regression modelling included being White, being nonsyndromic, having employment, and having better left ventricular function and asymptomatic status (p values < 0.05). Asymptomatic status (functional class I) was the factor associated with the greatest number of QOL and HS measures (p values < 0.001).


The authors conclude that strategies to improve TOF outcomes should consider PROs alongside conventional clinical variables. Factors associated with poorer PROs represent opportunities to intervene to improve the lives of TOF patients.


This study made use of relatively simple, but well-validated measures of perceived HS and QOL. With the LAS metrics, a study participant simply chooses where they feel they fit on a 0-100 scale. This study demonstrated that patients across all ages perceive that they have a relatively good QOL, although there was some decline in perceived HS with increasing age. Importantly, the study demonstrated that sociodemographic factors including race and employment status were predictors of more favorable PROs. It is important to note that the study included only patients with TOF and severe pulmonary valve regurgitation. This, as well as the exclusion of patients who could not undergo cardiac magnetic resonance imaging, may limit the generalizability of the study.

Clinical Topics: Cardiac Surgery, Cardiovascular Care Team, Congenital Heart Disease and Pediatric Cardiology, Invasive Cardiovascular Angiography and Intervention, Valvular Heart Disease, Cardiac Surgery and CHD and Pediatrics, Cardiac Surgery and VHD, Congenital Heart Disease, CHD and Pediatrics and Interventions, CHD and Pediatrics and Quality Improvement, Interventions and Structural Heart Disease

Keywords: Adolescent, Cardiac Surgical Procedures, Health Status, Heart Defects, Congenital, Mobility Limitation, Pain, Patient Reported Outcome Measures, Pulmonary Valve Insufficiency, Quality of Life, Tetralogy of Fallot, Ventricular Function, Left

< Back to Listings