The project used data from 14 European countries and found information about the survival and health of 180,000 children with a congenital defect and 2,000,000 children without a congenital defect. It looked at how these children fared in the first ten years.The impact on the parents was also examined.
Infographics were made of the results of the studies. View all infographics on EUROlinkCAT v5 (visme.co)
Experiences of parents
The study showed that parents of these children need positive information from professionals. They want more information and support when it comes to their child's abilities. Almost half of the 1,070 parents who completed an online survey in 10 European countries reported that they would have liked professional psychological support around the time of their child's diagnosis. Only 15% reported that they had actually received it.
The project team found that about 97 of 100 children born in 2005-2014 with a congenital anomaly reached the age of 10. When a child with a congenital anomaly dies, it is usually in the first year of life. Whether a child survives also depends on the severity of the congenital anomaly. If more than one congenital defect was present, the survival rate decreased. Interestingly, children born between 2005-2014 were significantly more likely to survive a congenital anomaly compared to children born between 1995-2004. There were also significant differences in survival between different European regions.
Risk of other diseases
Children born with congenital malformations were 40% more likely to have asthma than children born without congenital malformations. The results also showed that children with chromosomal abnormalities, such as Down syndrome, were two to three times more likely to develop type 1 diabetes compared to children without congenital abnormalities. Nearly half of children younger than one year born with severe heart disease needed cardiovascular medication to treat their condition, but this dropped to one in six after one year.
Children with congenital anomalies went to the hospital more often than children without congenital anomalies; 85% of them were admitted in the first year compared to 31% of children without congenital anomalies. Once admitted, these children stayed two to three times longer compared to children without congenital anomalies. Prospects were more positive after the first year, with fewer and shorter stays. Children with congenital anomalies had surgery more often and at a younger age than children without congenital anomalies.
Care experiences during the COVID-19 pandemic
The online survey took place from March to July 2021. Nearly two-thirds of parents in the United Kingdom (UK) and Poland reported "canceled or postponed" procedures compared with only about 20% in Germany, the Netherlands and Belgium. The UK and Poland also had the highest percentage of parents reporting 'cancelled or postponed' surgeries, 33% and 35% respectively, compared to only 8% in Germany. If a country's healthcare system is disrupted by a pandemic, it may be a reflection of the resilience of the healthcare system. This raises the question of whether care for these children could be improved in some regions if the entire healthcare system became more resilient.
In addition to Dr Hermien de Walle of Eurocat Netherlands, Dr Marian Bakker, Dr Renée Lutke and Nicole Siemensma-Mühlenberg were involved. The results of the EUROlinkCAT project were recently presented at a major conference in Poland.
Data available for researchers
A wealth of data on congenital anomalies and their impact on European children is available to researchers from home and abroad. Interested? Go to: EUROlinkCAT - Establishing a linked European Cohort of Children with Congenital Anomalies