Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study

Abstract

To assess the health-related quality of life (QoL) in children with congenital heart diseases (CHD) with a validated questionnaire in comparison with control children. We prospectively recruited 282 children with CHD aged from 8 to 18 years in two tertiary care centers (France and Belgium) and 180 same-age controls in randomly selected French schools. Children's QoL was self-reported with the KIDSCREEN-52 questionnaire and reported by parents with the KIDSCREEN-27. QoL scores of each dimension were compared between CHD and controls and between the classes of disease severity. Both centers were comparable for most demographic and clinical data. Age- and gender-adjusted self-reported QoL scores were lower in CHD children than in controls for physical well-being (mean ± SEM 45.97 ± 0.57 vs 50.16 ± 0.71, p < 0.0001), financial resources (45.72 ± 0.70 vs 48.85 ± 0.87, p = 0.01), peers/social support (48.01 ± 0.72 vs 51.02 ± 0.88, p = 0.01), and autonomy in the multivariate analysis (47.63 ± 0.69 vs 49.28 ± 0.85, p = 0.04). Parents-reported scores were lower in CHD children for physical (p < 0.0001), psychological well-being (p = 0.04), peers/social support (p < 0.0001), and school environment (p < 0.0001) dimensions. Similarly, the disease severity had an impact on physical well-being (p < 0.001), financial resources (p = 0.05), and peers/social support (p = 0.01) for self-reported dimensions, and on physical well-being (p < 0.001), psychological well-being (p < 0.01), peers/social support (p < 0.001), and school environment (p < 0.001) for parents-reported dimensions. However, in multivariate analysis on self-reported QoL, disease severity was significantly associated with the self-perception dimension only. Self-reported QoL of CHD children was similar to that of same-age healthy children in seven of 10 dimensions, but parents-reported QoL was impaired in four of five dimensions.

Cardiopulmonary fitness in children with congenital heart diseases versus healthy children

“…These results are consistent with previous results from smaller or non-controlled cohorts from the literature,28–31 where, to our knowledge, no multivariate analysis had been performed to identify the clinical determinants of VO 2max in cardiac children. We recently emphasised the impact of these clinical severity variables on the quality of life of children with CHD 6. In paediatric cardiology, CPET could therefore contribute to assess disease severity and its impact on daily living, as in adults with CHD 4 32…”

“…Yet there is a growing number of children and adolescents living with CHD,5 and their increase in life expectancy should also lead to a better quality of life. This includes the ability to engage in normal physical activity, which is a main quality of life parameter 6. Indeed, we recently pointed out a correlation between quality of life and VO 2max in a large cohort of children with CHD 7.…”

Efficiency of physiotherapy with Caycedian Sophrology on children with asthma: A randomized controlled trial

“…Unfortunately, the quality of life scores were not significantly higher in the sophrology group than in the control group, at the end of the hospitalization. Usually, patient reported outcomes require larger cohorts to be statistically modified, as reported in our previous quality of life studies …”

Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

“…Indeed, despite these great advances, psychological trauma is not uncommon for CHD survivors . Moreover, we recently showed that the quality of life was impacted by the number of invasive procedures and the level of anxiety in the CHD population …”

“…Assessing the level of anxiety in parents of children with CHD is of interest but remains time consuming for medical staff and patients, especially when using the existing instruments. Indeed, the 31‐item perinatal anxiety screening scale (PASS) and the 21‐item depression, anxiety and stress scale (DASS 21) both require a minimum of 20 minutes to be completed . These specialized anxiety scales have as such mainly been used in clinical research but only rarely on a routine basis .…”