Quality of Life of Children Born With a Congenital Heart Defect

Congenital heart defects are the most common cause of infant death linked to congenital malformations (CHDs). This group of congenital disorders therefore remains a cause for concern, despite improvements in medical and surgical management that have resulted in higher survival rates. This means that the question of health-related quality of life (QoL) remains an issue and indeed is often the first concern on parents' minds after their child's CHD diagnosis. The authors of this study aimed to evaluate the relationship between CHDs and QoL using data from a prospective population-based cohort study of CHD (the EPICARD study). This study had 2 main objectives: describing QoL at age 8 years for children born with a CHD (as reported by both the children and parents) and evaluating the association between the medical and surgical management of children with isolated CHD and their QoL. EPICARD was a population-based, prospective cohort study that reviewed the patient data of children with a CHD born in the greater Paris area. All cases with CHD diagnoses from the prenatal period up to 1 year of age between 2005 and 2008were included (live births, intrauterine fetal deaths, and pregnancy termination for fetal anomalies), and also incorporated a planned follow-up of children at 8 years via questionnaire. Patients were divided into 2 groups: those with isolated (ie, no chromosomal abnormalities or additional systemic malformations) and those with nonisolated CHD (CHD associated with chromosomal abnormalities or additional systemic malformations). The reference group was children with congenital heart defects that self-resolved in the first year of life without intervention. Results of the study were drawn from the characteristics of 751 patients, 598 of which had isolated CHD. No significant differences in QoL scores based on the mode of follow-up were detected (onsite vs postal mail). Overall, the mean self-reported total QoL score was 75.5 +/- 0.1 (61.5 +/- 0.2 for the physical score and 89.8 +/- 0.3 for the psychosocial score), whereas the mean parent-reported total score was 80.4 +/- 0.5 (86.9 +/- 0.6 for the physical score and 76.9 +/- 0.6 for the psychosocial score). The mean physical score showed no difference, although the mean self-reported total and psychosocial scores were significantly lower in the nonisolated CHD group when compared with the isolated CHD group (73.9 +/- 0.4 vs 75.8 +/- 0.2 [P < 0.001] and 91.9 +/- 0.4 vs 92.3 +/- 0.2 [P < 0.001]). Mean parent-reported scores for total, physical, and psychosocial scores followed the same trend: theywere significantly lower for the nonisolated CHD group compared with the isolated CHD group (70.9 +/- 1.5 vs 82.7 +/- 0.6 [P < 0.001], 76.5 +/- 1.9 vs 89.5 +/- 0.6 [P < 0.001], and 68.1 +/- 1.4 vs 79.1 +/- 0.6 [P < 0.001], respectively). Overall, both parent- and self-reported QoL scores for children with nonisolated CHD were lower when compared with scores of children with isolated CHD. Despite this finding, childrenwith nonisolated CHD reported better QoL than their parents did overall. The study also found the following scores to be lower in all subgroups when compared with the reference subgroup: self-reported QoL, parent-reported QoL, self-reported psychosocial scores, and parent-reported psychosocial scores. Notably, a large effect size was present for the complete repair after 3 years and palliative repair subgroups across the board, indicating lower scores for these groups. For those children with isolated CHD, both parental and child QoL scores appear to have a direct relationship with hospital experiences: those with hospital experiences reported lower QoL scores than the reference subgroup. The main reported category affecting QoL scores was the psychosocial category, most especially for those children who underwent complete repair after the age of 3, who reported lower scores after the experience. The findings also call into question how the parents' reaction to the experience of hospitalization may have an impact on their children's perception of their own QoL: a correlation between the parental and child psychosocial QoL scores suggests parents exhibiting anxious behavior (ie, overprotection) may influence their child's perception of QoL. This indicates the necessity of systematic psychological support for each of these families in order to benefit the child's long-term QoL. Limitations of the study include the self-reporting nature of the questionnaires, which were completed at home by participants and may thereby exhibit a reporting bias. However, comparing between different population groups demonstrated similar scores, suggesting that the influence of this potential bias is minimal. Another limitation is the lack of long-term data for a large proportion of the eligible study population. In addition, the study population was more likely to have higher socioeconomic status and complex CHD. Furthermore, there was a difference in the population sizes of various subgroups, possibly indicating a bias of ascertainment. All of these findings indicate a need for cautious interpretation of the data from this study. Although children without CHD were not included in the study, those with spontaneous resolution of their CHD within the first year of life (and therefore medically considered to have a normal heart) were included in the study. Those demonstrating the greatest impact on QoL were children with surgical procedures performed after 3 years of life, and this subgroup should have been further explored to determine the exact causes for the clear and negative impact on the psychosocial aspect of QoL, as reported by both parents and children in this subgroup.