Published: 26 May 2022
The EUROlinkCAT Project, led by researchers from St George’s, University of London, recently held their final conference (7/8 April 2022) to disseminate the project’s major research in the field of congenital anomalies (birth defects).
The aim of the EUROlinkCAT project was to examine the health of children born with congenital anomalies up to the age of 10 years old. The project used data from 17 congenital anomaly registries in 14 European countries, with information on survival and health in 180,000 children with a congenital anomaly and 2,000,000 children without a congenital anomaly. Differences in survival, hospitalisation and treatment were found between the two groups, with seven papers published so far from the project, and more to come.
Professor Joan Morris, lead investigator on the study, from the Population Health Research Institute at St George’s, said “In Europe, around 2.5% of babies are born with a major congenital anomaly. The results of our work now give us a picture of how long children spent in hospital, how many surgeries and prescriptions they had and what their chances of survival were compared to children without congenital anomalies.”
The conference attracted over 650 attendees from 59 countries in the host city of Poznań, Poland, and presented the findings of the project.
During the conference, the audience heard from 21 EUROlinkCAT researchers and 17 external experts about the survival of these children and their healthcare and education outcomes, as well as the experiences of their parents and carers. The speakers also made policy recommendations based on the project’s findings.
The conference focused on several key elements related to congenital anomalies:
Survival
The project team found that around 97 out of 100 children born during 2005-2014 with a congenital anomaly survived to 10 years of age. The highest number of deaths was during the first year of life. Survival varied depending on the severity of the congenital anomaly. Survival reduced if more than one congenital anomaly was present.
Survival of children with congenital anomalies improved substantially for children born during 2005-2014 compared with 1995-2004. There were considerable differences in survival between different European regions.
A congenital anomaly was mentioned as a cause of death on a death certificate in two thirds of children with a congenital anomaly who died during the first year of life, and in nearly half of children with a congenital anomaly who died aged 1-9 years. The researchers suggest that death certificates alone are an unreliable source of information for estimating mortality in these children. They recommend linkage of information on the causes of death with congenital anomaly registry data.
Risk of other conditions
Children born with congenital anomalies were 40% more likely to have prescriptions for asthma medications than children without congenital anomalies.
The results also showed that children with chromosomal anomalies such as Down's syndrome were two to three times more likely to develop type 1 diabetes compared to children without congenital anomalies.
Almost half of children under one year of age born with severe heart disease needed cardiovascular medications to treat their condition, but this decreased to one in six after one year of age.
Time in hospital
Children with congenital anomalies went into hospital more frequently than children without congenital anomalies, with 85% compared to 31% being admitted to hospital during the first year. Once admitted, these children stayed two to three times longer compared to children without congenital anomalies. The outlook is more positive after the first year, with fewer and shorter stays.
Children with congenital anomalies had more surgeries and at an earlier age than children without congenital anomalies.
Special education needs
Provisional results for the English, Welsh and Funen (Danish) registries showed that children with specific anomalies such as a congenital heart defect or cleft lip had greater special education needs up to 11 years of age than children without congenital anomalies.
The study identified a lack of data on education performance that could be linked to data on congenital anomalies. The study team encountered considerable barriers in obtaining approvals to access data that were available.
Parents’ experiences
Focus groups and interviews with 70 parents in four European countries found that parents wanted information from professionals to be more positive, and less focused on their child’s limitations. Some parents noted a lack of support from their health authorities.
Nearly half of 1,070 parents completing an online survey in 10 European countries reported that they would have liked professional psychological support around the time of their child’s diagnosis, but only 15% reported that they actually received any.
Healthcare experiences during the COVID-19 pandemic
The online survey occurred from March to July 2021, and almost two thirds of the responding parents in the UK and Poland reported ‘cancelled or postponed’ procedures (67% and 65% respectively), compared with only about 20% in Germany, the Netherlands and Belgium. The UK and Poland also had the highest proportion of parents reporting ‘cancelled or postponed’ surgeries, 33% and 35% respectively, compared to only 8% in Germany. Differences in the level of disruption across countries may reflect the relative healthcare systems, and raises questions about whether care for these children could be improved in some regions.
Following the conference, the study team made recommendations to improve the reporting of congenital anomalies in routine healthcare databases. In addition, they noted that the process for applying for and obtaining data for analysis needs to be reduced to enable future studies to be conducted in a timely manner; obtaining certain data took over three years in EUROlinkCAT.
“If the recommendations from the EUROlinkCAT conference are adopted, future studies linking health care databases will be able to provide further valuable and more comprehensive information on children with congenital anomalies for parents, healthcare professionals and health authorities,” says Professor Morris.