• Home
• EUROlinkCAT
• *PARENTS AREA*
• Infographics
• EUROlinkCAT Results Explorer
• WP 1 - Co-ordination & Management
• WP 2 - Building Results Repository
• WP 3 - Survival
• WP 4 - Morbidity
• WP 5 - Education
• WP 6 - Accuracy of Coding
• WP 7 - ConnectEpeople
• WP 8 - Dissemination
• WP 9 - Ethics Requirements
• Publications
• WP1 Protocol Paper
• WP2 Linkage Paper
• WP3 Systematic Review
• WP3 Ten-year Survival Paper
• WP3 Rare Structural Survival Paper
• WP3 Temporal and Geographical Variations Paper
• WP3 Trisomy 13 and 18 Paper
• WP4 Cardiac Medications Paper
• WP4 Feeding Tubes Paper
• WP4 Length of Stay Paper
• WP4 Medications and preterm births Paper
• WP4 Insulin Paper
• WP4 LOS Rare anomalies Paper
• WP4 Surgery Paper
• WP4 Pierre Robin Paper
• WP5 Systematic Review
• WP6 Live Births Paper
• WP6 TOPFA Paper
• WP8 Focus Group Paper
• WP8 COVID-19 Paper
• WP8 Information Needs Paper
• Submitted version of papers prior to publication
• Study Partners
• Useful Links
• Contact Information & Data Requests

COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services

Lay Summary

Children who have structural congenital anomalies (also called birth defects) require on-going medical care. The COVID-19 pandemic had a major impact on the delivery of medical care across the world, with parents of children with congenital anomalies reporting cancellations to healthcare appointments and a lack of support from healthcare professionals. In this study we surveyed parents and carers of children with congenital anomalies across Europe, to explore their experiences of healthcare services and support during the COVID-19 pandemic.

We developed a survey in nine languages and asked relevant organisations in 10 European countries to advertise it online and via social media (the Dutch survey was used both in Belgium and the Netherlands). We invited parents and carers of children (up to 10 years of age) who had one or more of the following health conditions to take part: (1) spina bifida, (2) a congenital heart defect which required surgery, (3) a cleft lip (with or without a cleft palate), and (4) Down syndrome. Parents were asked to complete the survey once, which was available from March to July 2021.

In total 1,109 people completed the survey. These were parents and carers of children with a congenital heart defect (n=366), Down syndrome (n=281), a cleft lip (n=247), spina bifida (n=118), Down syndrome with congenital heart defect (n=58), and other combinations of the four anomalies (n=15). Parents and carers lived in Poland (n=476), the UK (n=120), Germany (n=97), Belgium/Netherlands (n=74), Croatia (n=68), Italy (n=59), and other European countries (n=92).  

Overall, many parents reported that their child’s routine care had been disrupted during the pandemic. Some parents reported that this disruption had a negative impact on their child’s health. There were differences across countries in the proportion of parents who reported disruptions. The UK (67%) and Poland (65%) had the highest proportion of parents reporting ‘cancelled or postponed’ procedures, compared with only about 20% in Germany and the Netherlands/Belgium. The UK and Poland also had the highest proportion of parents reporting ‘cancelled or postponed’ surgeries, 33% and 35% respectively. This compared to only 8% in Germany. Parents were least satisfied with the support they received from their GP or specialist doctor/nurse during the pandemic, and scored patient organisations and friends and family more highly.

These findings highlight disruptions to the delivery of care across Europe, particularly in the UK and Poland, which raises questions about the ability of the healthcare systems within these countries to meet the needs of children with congenital anomalies and their families.

Full paper

https://doi.org/10.1136/bmjopen-2022-061428

Submitted version of paper prior to publication