Congenital cardiac abnormalities are the most frequent congenital abnormalities (8-12/1000 births). According to the European study EUROCAT, out of 3.3 million of births per year in the European Union, around 36,000 children were born with a congenital heart disease (CHD) and 1,250 perinatal deaths were related to a CHD. The impact of these pathologies is not only related to the surgery but also to indirect life quality issues such as related pathologies, permanent medication, restricted physical activity and the loss of performance during studies and professional activities due to treatments, surgeries and other issues.
In addition to healthcare costs directly related to surgery, children with congenital heart disease often require numerous hospital visits, care by a multidisciplinary team of specialists, frequent imaging and other diagnostic testing, drug and device therapy, and life-long outpatient follow-up. Some medico-economic studies recently demonstrated that families of children with congenital heart disease face average direct non-medical and indirect costs of approximately €3000 per year. Financial costs also include job change or job loss for their parents or loss of earnings due to taking time off work to attend appointments. CHD also have an emotional impact in term of stress for the child and his/her family. Some studies showed that the increased disease complexity and also the need for multiple surgical interventions are correlated with increased out-of-pocket costs and overall emotional and family burden.