ABSTRACT
OBJECTIVES: To determine health-related quality of life (HRQoL) in 1-year-old infants with congenital heart disease (CHD), to follow-up with these children at age 4 years, and to examine predictors of HRQoL. STUDY DESIGN: Parents of 144 infants who had undergone cardiopulmonary bypass surgery for CHD before age 6 months were prospectively included in this cohort study. Parents completed a standardized questionnaire on child HRQoL at 1 year and 4 years of age; medical data were extracted from the patients' hospital records. RESULTS: Parents reported a significant reduction of the children's physical functioning compared with healthy controls at age 1 year. At age 4 years, children with CHD had poorer cognitive functioning but better social functioning compared with healthy controls. Lower HRQoL at age 4 years was not significantly predicted by univentricular or biventricular CHD but was predicted by the presence of an underlying genetic defect, tube feeding at 1 year, and lower HRQoL at 1 year. CONCLUSION: This study shows that HRQoL of infants and preschool-age children with CHD is impaired in physical and cognitive dimensions. Children with lower overall HRQoL at age 1 year, an underlying genetic defect, and tube feeding need to be monitored carefully to provide appropriate and timely interventions.
Subject(s)
Cardiac Surgical Procedures , Heart Defects, Congenital/surgery , Quality of Life , Social Adjustment , Child, Preschool , Female , Follow-Up Studies , Heart Defects, Congenital/psychology , Humans , Infant , Male , Postoperative Period , Prognosis , Prospective Studies , Surveys and QuestionnairesABSTRACT
OBJECTIVE: To assess health-related quality of life (HRQOL) in children with congenital heart disease (CHD) after open-heart surgery and to identify medical, individual, and family-related predictors of outcome. STUDY DESIGN: Cross-sectional cohort study. 155 children with CHD (40% cyanotic type) who underwent open-heart surgery between 1995 and 1998 were eligible. One hundred and ten patients (response rate 71%) were investigated at a mean age of 10.4 years. Mean age at operation was 2.3 years (range, 0-8.7 years), mean duration of cardiopulmonary bypass was 95 minutes (range, 5-206 minutes), and circulatory arrest was performed in 9% of the children. Child- and parent-rated HRQOL was evaluated by the TNO-AZL Child Quality of Life Questionnaire. Scores were compared with healthy references. RESULTS: Most dimensions of self-reported HRQOL were impaired, including autonomy and motor, social, and emotional functioning. In addition to the children's ratings, parents rated cognitive functioning of their children as diminished. Multivariate analyses revealed that duration of cardiopulmonary bypass, length of hospitalization, need for current cardiac medication, and adverse family relationships had a negative impact on parent- but not on child-rated HRQOL. CONCLUSIONS: HRQOL is impaired in children with CHD after open-heart surgery. Medical variables and the quality of family relationships are important determinants.