Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

Abstract

This study aimed to assess the quality of life (QOL) experienced by adolescents and young adults with congenital heart disease (CHD) and to determine which factors negatively affect adjustment and which factors increase resilience. The participants in the study were 74 patients with CHD (41 males and 33 females) ranging in age from 12 to 26 years (mean age, 18.76 ± 3.86 years). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding topics such as social support, family educational style, selfimage, and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed a self-report questionnaire (WHOQOL-BREF) for assessment of QOL. Compared with the Portuguese population as a whole, the study patients had better QOL, especially with regard to the environmental dimension (t = 3.754; P = 0.000) and social relationships (t = 2.333; P = 0.022). Patients who had undergone surgery experienced poorer QOL in the physical dimension (t = -1.989; P = 0.050), in social relationships (t = -2.012; P = 0.048) and overall (Mann-Whitney U = 563.000; P = 0.037). Social support played a positive role in the QOL of the patients, both in the physical dimension (t = 3.287; P = 0.002) and in social relationships (t = 3.669; P = 0.000). A higher school achievement also was associated with higher levels of QOL overall (Mann-Whitney U = 457.000; P = 0.046) as well as in the physical (t = 2.045; P = 0.045) and environmental (t = 2.413; P = 0.018) dimensions. Physical limitations had a detrimental impact on general QOL (Mann-Whitney U = 947.500; P = 0.001) and on the physical (t = -2.910; p = 0.005) and psychological (t = -2,046; P = 0.044) dimensions. Patients with CHD tended to perceive QOL as better when their social networks were supportive.

Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation

“…Diminished social functioning and problems with social cognition have been recognized in patients with CHD 26 with perceived social support identified as a positive and potentially modifiable predictor of QOL in adolescents and adults with Fontan or other CHD. 24, 27–30 …”

A cohort study on psychosocial adjustment and psychopathology in adolescents and young adults with congenital heart disease

“…Additional questionnaires used in this research are described in detail in another report. 11 We used an identification form to collect personal and demographic data from each patient (eg, marital status, educational level and occupation), as well as all relevant aspects from their medical history (diagnosis, severity and category of heart disease, surgical interventions, pharmacological therapy and presence of residual lesions, among others).…”

Somatic mutations in the GATA6 gene underlie sporadic tetralogy of Fallot

“…Without surgical repair, 25% of TOF patients with severe obstruction succumb to the disease within the first year, 40% succumb to the disease by the age of 3, 70% by the age of 10, and 95% by the age of 40 (1)(2)(3). Various congenital cardiovascular anomalies, such as atrial septal defect, ventricular septal defect, atrioventricular septal defect, TOF, patent ductus arteriosus, double outlet right ventricle, aortic stenosis, and transposition of great arteries, can occur alone or together, leading to poor quality of life, cardiac enlargement or hypertrophy, ventricular dysfunction or failure, delayed fetal brain development, pulmonary hypertension, Eisenmenger's syndrome, arrhythmias, and even sudden cardiac death in the absence of surgical or catheterbased corrections (4)(5)(6)(7)(8)(9)(10). Despite the high prevalence and the important clinical significance, the etiology responsible for CHD remains to be identified in an overwhelming majority of patients (11)(12)(13).…”