Abstract
BACKGROUND: This study aimed to assess parental perceptions of quality of life in children aged 5-18 with simple and complex forms of repaired tetralogy of Fallot and its determinants, using an original survey including the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) questionnaire. METHODS AND RESULTS: Data were gathered through an original online survey of repaired tetralogy of Fallot patients at a reference center for congenital heart disease. The survey, conducted between March and July 2023, included the PedsQL 4.0 (parental version), inquiries on extracurricular sports participation, sleep patterns, distance from the hospital, and social assessment. Of 74 contacts, 51 responses were obtained, representing children with an average age of 10.5 ± 3.7 years. Parents perceived lower quality of life in these children compared to healthy Portuguese counterparts, both in physical (72% vs. 83.5%, P < 0.001) and psychosocial (73% vs. 78.2%, P = 0.01) dimensions. Higher physical and psychosocial quality of life were associated with extracurricular sports practice (P = 0.012 and P = 0.008, respectively), as well as with a greater number of hours spent in extracurricular sports (P < 0.00001 and P = 0.01, respectively). Factors such as sleep patterns, distance from the hospital, socioeconomic status, and number of surgeries did not correlate with quality of life. CONCLUSION: Portuguese children with repaired tetralogy of Fallot exhibit a lower quality of life than their healthy peers, as perceived by parents. Regular sports engagement is associated with improved quality of life, emphasizing the importance of assessing sports habits as an integral component of their follow-up.