The impact of congenital heart disease on the psychological well-being and quality of life of Hong Kong Chinese adolescents

Abstract

Advances in medical and surgical care and technologies enable growing numbers of congenital heart disease (CHD) patients to survive. However, CHD in adolescents is associated with negative psychological impact and impairment of quality of life. A literature review revealed that most studies to date on the impact of CHD and its treatments on the psychological well-being and quality of life of adolescents have been conducted in Western populations. Given the distinctiveness of the Hong Kong Chinese culture, this study examined the psychological well-being and quality of life of Hong Kong Chinese adolescents with CHD. The two key objectives of the study were (1) to compare the self-esteem level, depressive symptoms, and quality of life of adolescents suffering from CHD with their healthy counterparts; and (2) to identify possible factors affecting the quality of life of adolescents suffering from CHD. A cross-sectional design was employed. Adolescents aged 12–18 with CHD attending an outpatient clinic in an acute public hospital were invited to participate. Another similar age group of healthy Chinese adolescents who participated in health check-up booth of the carnival organized by the integrated child and youth service center were also invited to participate for comparison purposes. Subjects were asked to respond to the Chinese version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales, Center for Epidemiologic Studies Depression Scale for Children, Rosenberg Self-Esteem Scale, and a demographic sheet. A total of 30 adolescents with CHD were purposively selected for semi-structured interviews. Analysis with the independent t-test showed that adolescents with CHD exhibited more depressive symptoms and reported lower self-esteem and poorer quality of life than their healthy counterparts. ANOVA analyses found disease severity might affect the self-esteem, depressive symptoms and quality of life of adolescents with CHD. Multiple regression analyses revealed that disease severity, depressive symptoms, self-esteem level, and types of treatment received were associated with the quality of life of adolescents with CHD. Qualitative interviews provided insights into the lived experiences of adolescents with CHD, including how the adverse effects of CHD and its treatments affect the physical and psychological well-being, relationships with significant others, and coping behavior of adolescents with CHD. Adolescents suffering from CHD experience negative impacts on their psychological well-being and quality of life. In this group, disease severity may affect self-esteem, depressive symptoms, and quality of life. Specifically, the quality of life of adolescents with CHD was associated with disease severity, depressive symptoms, self-esteem level, and the type of treatment received. Healthcare professions must engage themselves to advocate the importance of promoting the psychological well-being and quality of life of adolescents with CHD and assimilate holistic and integrated care into their practice. Moreover, identifying risk factors and signs of compromised quality of life and psychological well-being at an early stage is important for developing and evaluating appropriate interventions and treatments for adolescents with CHD.