Abstract
BackgroundIn the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population.MethodsThis multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0).ResultsSelf-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization).ConclusionHRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD.Trial registration This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02-19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096.
Highlights
In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD)
The transition from home to school requires developing new skills, involving physical activity, socialisation, autonomy, and self-confidence. This period may represent new challenges for young children with CHD, as well as for their families. In this multicentre prospective controlled study, we aimed to evaluate HRQoL of children with CHD aged 5 to 7, in comparison with contemporary peers recruited in schools
The most frequent types of CHD were in the following order: ventricular septal defects (n = 32, 26%), anomalies of the atria and interatrial communications (n = 16, 13%), aortic valve stenosis (n = 14, 11%), and tetralogy of Fallot (n = 12, 10%)
Summary
In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). In the past two decades, great advances in medical and surgical treatments for patients with congenital heart diseases (CHD) have significantly increased their life expectancy, and currently most children with CHD are expected to reach adulthood without any severe physical impairment [1, 2]. Previous studies have reported that many children with CHD were concerned with behavioural, emotional, or cognitive issues [4, 5]. Some of these children may be trapped in the vicious circle of muscular deconditioning and suffer from reduced exercise capacity, resulting in a lower HRQoL, despite the absence of any severe physical impairment [2, 6]. Parental overprotection and restriction recommendations by physicians have built some barriers to physical activity for youngsters with CHD [8,9,10]
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