Health-Related Quality of Life in Adolescents with Congenital Heart Disease: Importance of Parental Hope

PURPOSE This study aims to evaluate the health-related quality of life of adolescents with congenital heart disease, describing health-related quality of life according to the diagnosis and severity of congenital heart disease, identified by variables such as the presence of symptoms, surgical interventions, use of medication, and residual lesion. METHODS A cross-sectional study was conducted on 203 adolescents with congenital heart disease attended at the Pediatric Cardiology ambulatory of a reference hospital in Brazil. The Brazilian version of the questionnaire KIDSCREEN-27 was used for the assessment of health-related quality of life. Information related to the congenital heart disease diagnosis and clinical variables were collected from the medical records of the patients. RESULTS There was no statistically significant difference between acyanotic and cyanotic groups, as well as for the different diagnosis of congenital heart disease. A trend for better health-related quality of life in the dimension of Psychological Well-Being (p=0.054) was found in the groups with surgical intervention and use of medication. Adolescents that referred a good general health presented significantly better results in all dimensions of health-related quality of life, except for Autonomy and Parent Relation, than those who presented clinical symptoms (p<0.05). CONCLUSIONS Type of congenital heart disease and initial diagnosis did not seem to affect the perception of health-related quality of life, corroborating findings of several studies. Surgical interventions and the use of medication can improve previous clinical status, and therefore it seems to be beneficial in terms of Psychological Well-Being. The presence of clinical symptoms was the variable that caused the largest impact on the perception of health-related quality of life, possibly because of the impairment they bring to the daily lives of these patients.