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

Abstract

BackgroundThe 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.MethodsNinety-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.ResultsNew York heart association class (Adj R2 = .186, p = .000), presence of siblings (Adj R2 = .240, p = .010), and mother’s emotional warmth (Adj R2 = .265, p = .043) were significantly associated with the health related quality of life of adolescents with congenital heart disease.ConclusionsEmotionally 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.

Health-Related Quality of Life in Children and Adolescents with Simple Congenital Heart Defects before and after Transcatheter Intervention Therapy: A Single-Center Study

“…But in some other studies, the quality of life of children with simple congenital heart defects was influenced not only by the disease but also by the family composition, family economic situation, parents' education level, and family's knowledge of the disease. 28,29) Moreover, it was also of great significance for the children and their parents to receive psychosocial guidance after the treatment, which may better help the children return to normal social and school life and achieve dual physical and psychological rehabilitation, which has been confirmed in some studies. 30) Therefore, we will further explore the influence of demographic factors on quality of life in the future study.…”

Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries

“…Our finding that having three or more siblings was independently associated with better emotional quality-of-life might be explained by a pseudo-parental role played by older siblings as opposed to younger siblings who might compete for parental attention. Prior studies in both CHD 40,41 and other childhood chronic diseases 42,43 are divided on the effect of siblings on emotional quality-of-life.…”

Effects of minimally invasive and traditional surgeries on the quality of life of children with congenital heart disease: a retrospective propensity score-matched study

“…Traditional indicators for treatment outcomes, such as survival and mortality rates, reflect the treatment outcomes of children with CHD from the medical perspective. With the changes in health concepts and medical care modes, the goal of medical care is not only to maintain life and improve organ function but also to improve the quality of life (QOL), which has become another recognized evaluation index of treatment success [ 1 , 6 ]. Under such circumstances, the health-related QOL of children with CHD has attracted widespread attention from scholars.…”