An assessment of the medical and psychosocial outcomes of adolescents with heart disease

Approximately 1 percent of newborns are born with congenital heart disease (CHD). Improved medical outcomes following recent advances in medical technology have resulted in an increasing number of CHD patients who survive into adolescence and adulthood. Therefore, the quality of life of these patients is becoming increasingly important. Though there have been many studies of the quality of life in adults with CHD, studies of the adolescent population are scarce. CHD is the main heart disease in adolescents. This study aimed to assess the medical and psychosocial outcomes and health related quality of life (HRQoL) of adolescents with heart disease. The majority of the adolescents studies have CHD. The study aimed to evaluate the prevalence and contributory factors of depression and anxiety in the subjects studied, and to assess their knowledge and understanding of their individual cardiac abnormalities. It also evaluated the predictors of health-related quality of life. A cohort of adolescents with heart disease was recruited from an ambulatory setting at a tertiary centre and a private clinic. Patients completed self-report questionnaires, which were supplemented by clinical information provided by the attending cardiologists. The patient questionnaires contained the Paediatric Quality of Life Inventory 3.0 - Cardiac Module, the Hospital Anxiety and Depression Scale, the Multidimensional Scale of Perceived Social Support, the Life Orientation Test-Revised and the Sense of Coherence-13. In addition, it included a researcher-designed questionnaire to assess the adolescent’s knowledge of his or her cardiac condition. Ethical approval was obtained from the hospital and Monash University prior to commencement of the study. SPSS 17.0 was used for statistical analysis. In general, the medical outcomes and health-related quality of life in this cohort of adolescents with heart disease were good. However their knowledge and understanding of their individual cardiac abnormalities were poor according to their score percentages. Approximately one-third of patients were above the cut-off score for probable/possible anxiety, and about one-tenth in the range for probable/possible depression. Anxiety and depression were the main predictors of health-related quality of life which was correlated with other multiple factors including a sense of coherence, a feeling of optimism, social support, and knowledge and understanding of individual cardiac abnormalities. A sense of coherence, social support (friends subscale) and a feeling of optimism were significantly negatively correlated with depression and anxiety that could impact on health-related quality of life. An improved knowledge and understanding of their cardiac abnormalities occurred with increasing age. These findings raise important questions about the high frequency of depression and anxiety in an apparently well group of adolescents. The poor knowledge and understanding of their cardiac condition impacted negatively on their cardiac- related quality of life. It is important to improve the psychological functioning of the increasing number of adolescents with CHD. Specific intervention studies to address these issues should be planned to translate the findings into improved clinical outcomes.