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

Objective To survey parents and carers of children with acongenital anomaly across Europe about their experiencesof healthcare services and support during the COVID-19pandemic.Design Cross-sectional study.Setting Online survey in 10 European countries, openfrom 8 March 2021 to 14 July 2021.Population 1070 parents and carers of children aged0-10 years with a cleft lip, spina bifida, congenital heartdefect (CHD) requiring surgery and/or Down syndrome.Main outcome measures Parental views about: theprovision of care for their child (cancellation/postponementof appointments, virtual appointments, access tomedication), the impact of disruptions to healthcare ontheir child's health and well-being, and satisfaction withsupport from medical sources, organisations and closerelationships.Results Disruptions to healthcare appointments weresignificantly higher (p<0.001) in the UK and Poland,with approximately two-thirds of participants reporting'cancelled or postponed' tests (67/101; 256/389) andprocedures compared with approximately 20% in Germany(13/74) and Belgium/Netherlands (11/55). A third ofparticipants in the UK and Poland reported 'cancelled orpostponed' surgeries (22/72; 98/266) compared withonly 8% in Germany (5/64). In Poland, 43% (136/314)of parents reported that changes to their child's ongoingtreatment had moderately to severely affected theirchild's health, significantly higher than all other countries(p<0.001). Satisfaction ratings for support from generalpractitioners were lowest in the UK and Poland, and lowestin Poland and Italy for specialist doctors and nurses.Conclusion A large proportion of participants reporteddisruptions to healthcare during the pandemic, whichfor some had a significant impact on their child's health.Regional differences in disruptions raise questions aboutthe competence of certain healthcare systems to meetthe needs of this vulnerable group of patients and indicateimprovements should be strived for in some regions.