“EUROlinkCAT” project on congenital anomalies in children completed

15/06/2022

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“EUROlinkCAT – Establishment of a connected European cohort of children with congenital anomalies”, funded under the European Union Horizon 2020 program, for research on the subject of congenital anomalies, with the participation of the Institute of Clinical Physiology of the National Research Council of Pisa (Cnr-Ifc) under the guidance of Anna Pierini The project has as partners 22 participants involved.

“EUROlinkCAT” used the existing infrastructure of the European network for the monitoring of congenital anomalies EUROCAT to support 21 registers in 14 European countries, including the Tuscan register of congenital defects, to cross-reference data on congenital anomalies observed in the period 1995-2014 with the database of mortality, hospital discharge, drug prescriptions, and data on special educational needs.

The purpose of “EUROlinkCAT” was to expand knowledge about the health status of children born with congenital anomalies up to the age of 10 by using data from the registers of congenital anomalies in 14 European countries involving about 180,000 children with a congenital anomaly compared to approx. 2,000,000 children without a congenital anomaly.

The results of the project were presented in connection with the final conference “Health and education outcomes of children across Europe with congenital anomalies”, which was held on 7-8. April 2022. The last event attracted over 650 participants, including researchers, healthcare professionals, patient and parent associations from 59 European countries.

Study Coordinator Prof. Joan Morris (Population Health Research Institute, St George’s University of London) said that in Europe, about 2.5% of children are born with a severe congenital anomaly. In this sense, the results of “EUROlinkCAT” are able to provide a general picture of hospitalization times, the treated surgeries and the prescriptions that children with congenital anomalies receive, compared to children without congenital anomalies, as well as their chances of survival. “

Indeed, from the study of the two groups of children, significant differences were found in terms of survival, hospitalization, and treatment, with the first results reported in seven articles already published, while numerous other data will be available soon.

During the conference, the voices of 21 “EUROlinkCAT” researchers and 17 experts on epidemiological, health and educational data for children with congenital anomalies alternated, also supported by the results of the study conducted on the experiences of parents and guardians.

As will become clear, there are many key elements related to congenital anomalies that have been evaluated and analyzed within the project:

Survival

The project team found that about 97 out of 100 children born between 2005-2014 with a congenital anomaly survived to the age of 10 years. Among these, the highest number of deaths occurred during the first year of life.

The survival of these children varied depending on the severity of the congenital anomaly, with a reduction in survival if more than one congenital anomaly was present.

As stated by Michele Santoro of Cnr-Ifc, coordinator of the study on temporal and geographical variations of survival: “the data on the survival of children with congenital anomalies have significantly improved for children born in the period 2005-2014 compared to the decade 1995 -2004, although significant differences have been observed between the various European countries ”.

Congenital anomaly is mentioned as the cause of death on the death certificate in two thirds of children with congenital anomaly who died during the first year of life, and in almost half of children with congenital anomaly who died aged 1-9 years. years. These results suggest that death certificates alone represent an unreliable source of information for estimating survival in these children, and recommend linking mortality information with data from congenital anomaly registers. “

Risk of other conditions

Children with congenital anomalies were more than 40% more likely to receive prescriptions for respiratory disorders, such as asthma, compared with children without congenital anomalies. The results also showed that children with chromosomal abnormalities, such as Down syndrome, are two to three times more likely to develop type 1 diabetes than children without congenital abnormalities.

In addition, nearly half of children with severe congenital heart disease in the first year of life require cardiovascular medication to treat their condition. However, the number is reduced to every sixth child after the age of one.

Hospital admissions

As expected, children with congenital anomalies were admitted more frequently than children without anomalies (85% admissions in the first year of life against 31%). After admission, their stay was two to three times longer than in children without congenital anomalies. After the first year of life, however, there were fewer admissions of shorter duration.

Based on the data collected, children with congenital anomalies were also operated on more and at an earlier age than children without congenital anomalies.

Special educational needs

Preliminary results from the English, Welsh and Danish registers showed that children with specific abnormalities such as congenital heart disease or cleft lip had greater special educational needs up to 11 years than children without congenital abnormalities.

However, the study found a lack of academic performance data, which would be very useful when cross-referenced with data from congenital anomaly registers.

Parents’ experiences

THAT focus group and interviews conducted with 70 parents in four European countries as part of the project showed that parents wanted information from professionals to be more positive and less focused on their children’s limitations. Some parents also reported a lack of support from their country’s health authorities.

Nearly half of 1,070 parents conducted a survey online in 10 European countries reported that they would like professional psychological support when diagnosing their child; only 15% reported that they had actually received one.

Health experiences during the Covid-19 pandemic

The investigation online which took place during the pandemic, from March to July 2021, showed that almost two thirds of responding parents in the UK and Poland canceled or postponed medical procedures (67% and 65% respectively), compared to only about 20% in Germany, the Netherlands and Belgium.

The UK and Poland also reported the highest percentage of parents reporting having canceled or postponed surgeries, 33% and 35% respectively, compared to only 8% in Germany.

Such differences in the level of “health problems” between countries may reflect their systems and raise questions about the possibility of improving the care of these children in some regions.

In light of these findings, the project team also seeks to improve the reporting of congenital anomalies in routine health databases.

Moreover, the process of requesting and obtaining data for analysis takes a very long time (sometimes even years) and often does not facilitate timely implementation of programs for future studies. That was exactly what was discussed at the closing “EUROlinkCAT” conference. “If these recommendations are adopted – concludes Morris – we will, thanks to the connection to health databases, be able to provide valuable and more complete information on children with congenital anomalies to parents, health professionals and health authorities”.

For information:
Anna Pierini
Section of Epidemiology of Rare Diseases and Congenital Anomalies, Department of Clinical Physiology Cnr – Pisa
apier@ifc.cnr.it
Carlo Venturini, media relations Cnr Pisa area, e-mail: carlo.venturini@iit.cnr.it

Press office:
Emanuele Guerrini
Press Office Unit
emanuele.guerrini@cnr.it

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