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Published: 20 July 2022

A study co-led by St George’s researchers has found that parents and carers of children with congenital anomalies reported experiencing serious disruption to their children’s care during the Covid-19 pandemic. Poland and the United Kingdom were the worst affected, finds a survey.

Congenital anomalies are a range of conditions children have from birth, which may result in long-term illness and/or disability, including congenital heart defects and Down syndrome.

Children with congenital anomalies are considered a vulnerable patient population and many need regular medical support, including primary care appointments, hospital visits and surgeries.

Understanding parents’ and carers’ experiences of these services, as well as other forms of support such as from patient organisations, has been especially important during the SARS-CoV-2 pandemic when there has been increased pressure on healthcare systems. Existing research from early in the pandemic suggested that many children had appointments and treatments cancelled or postponed, causing anxiety for parents.

The researchers surveyed over 1,000 parents and carers of children with a congenital anomaly about their experiences of healthcare services and support, actively recruiting participants in 10 European countries - Belgium, Croatia, Denmark, Germany, Italy, Netherlands, Poland, Portugal, Spain and the United Kingdom.

The results showed that there was some disruption to children’s care everywhere, but some countries fared worse than others. In the UK and Poland, for example, around two-thirds of people reported cancelled or postponed tests and procedures compared with around one-fifth in Germany and Belgium/the Netherlands.

A third of participants in the UK and Poland also reported cancelled or postponed surgeries compared with just 8% in Germany. Alongside, in Poland, 43% of parents reported that changes to their child’s ongoing treatment had moderately to severely affected their child’s health, significantly higher than in all other countries.

Satisfaction ratings for support from general practitioners were lowest in the UK and Poland, and lowest in Poland and Italy for specialist doctors and nurses.

Dr Elena Marcus, a researcher leading the study in the Population Health Research Institute at St George’s, says, “Our survey findings highlight disruptions to the care of children with congenital anomalies across Europe, particularly in the UK and Poland. In some cases, this was having an impact on the child’s health.”

“Our findings raise questions about the ability of the healthcare systems in these countries to meet the needs of these children and their families – perhaps due to existing vulnerabilities – and draws attention to a need for increased resources in the long term to improve patient experiences and outcomes.”

- Dr Elena Marcus -

Background to the survey

The survey was conducted online between March and July 2021 and was intended for people whose child was up to 10 years old and had a cleft lip, spina bifida, congenital heart defect, or Down syndrome. A total of 1,070 people completed the survey, and the proportion of congenital anomalies the respondents represented reflects the number of children with these conditions in Europe.

Although the survey was open to all and shared widely, there is a risk that respondents did not represent the views and experiences of all parents with children with a congenital anomaly. For example, it may have missed people with less access to digital technologies or those who are less involved with patient groups. The survey was also open for different amounts of time in each country, which may have affected the results.

This work was part of the wider EUROlinkCAT Project which aims to investigate the health of children born with congenital anomalies.

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