Abstract 11024: 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 PedsQL scores for Fontan subjects were significantly lower than those for the control group for physical and psychosocial QOL, including emotional, social, and school/work QOL, all p<0.001. Overall, 45% of Fontan subjects had scores in the impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (p=0.004) and the emotional functioning score decreased by an average of 0.64 points (p=0.03); among subjects ≥ 19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (p=0.02). Physical and psychosocial functioning scores were not associated with Fontan type. Males reported higher scores than females for physical (p<0.001) and emotional QOL (p=0.002). PedsQL scale scores were significantly correlated with conceptually related CHQ-87 (p<0.001) and SF-36 scores, p<0.001.
Conclusion: Physical and psychosocial QOL are impaired in a substantial number of Fontan survivors and may decline with advancing age. Routine assessment of health-related QOL is essential to inform interventions to improve outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.
Author Disclosures: K. Uzark: None. V. Zak: None. P. Shrader: None. B.W. McCrindle: None. E. Radojewski: None. J.W. Varni: Other; Modest; Dr. Varni holds the copyright and trademark of the PedsQL and receives financial compensation from the Mapi Research Trust.. J. Handisides: None. K. Daniels: None. K. Hill: None. L. Lambert: None. R. Margossian: None. V.L. Pemberton: None. W.W. Lai: None. A.M. Atz: None.
- © 2014 by American Heart Association, Inc.