Health condition and familial factors associated with health-related quality of life in adolescents with congenital heart disease: a cross sectional study

Background: The focus of clinical care after the repair of congenital heart disease has shifted from saving life of the patient to the patient's quality of life. The purpose of this study was to examine the health condition and familial factors associated with the health related quality of life of adolescents with congenital heart disease. Methods: Ninety-eight adolescents aged 13-19 years were collected from a congenital heart clinic from July 22 to August 23, 2013. Perceptions of parental rearing behaviors, health related quality of life of adolescent with congenital heart disease, and general characteristics were measured. We used multiple linear regression analysis to explore factors that are associated with the health related quality of life of adolescents with congenital heart disease. Results: New York heart association class (Adj R-2 = .186, p = .000), presence of siblings (Adj R-2 = .240, p = .010), and mother's emotional warmth (Adj R-2 = .265, p = .043) were significantly associated with the health related quality of life of adolescents with congenital heart disease. Conclusions: Emotionally warm parental rearing behaviors and the presence of siblings were important familial factors that were positively associated with HRQOL in adolescents with CHD. Therefore, it is important for healthcare providers to develop a greater sensitivity to, and awareness of, the familial influences that may be impacting a subject's HRQOL, as well as the exigencies of the CHD, itself.