Quality of Life in Adolescents and Young Adults After the Fontan Operation: The Pediatric Heart Network Fontan Follow-Up Study

Objective: While life expectancy for children with single ventricle has improved, the potential impact of the Fontan circulation on overall quality of life (QOL) and functioning during transition to adulthood is largely unknown. We sought to describe QOL in a large multicenter cohort of adolescent and young adult Fontan survivors. Methods: The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 Fontan subjects ages 13-25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Data were compared to control subjects without a chronic health condition from the PedsQL database (n=342) who were similar in age, gender, and race/ethnicity. Higher scores indicate better QOL. Scores > 1 standard deviation below the population mean reflect at-risk status for impaired QOL. Subjects also completed either the Child Health Questionnaire (CHQ-87, age< 19), or the Short Form 36 (SF-36, age ≥ 19). Results: Mean age was 18.5 ± 3.4 years, 58% male, mean time post-Fontan 14.7 ± 3.8 years. Mean ...