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

Anna Latos-Bieleńska, Elena Marcus*, Anna Jamry-Dziurla, Judith Rankin, Ingeborg Barisic, Clara Cavero-Carbonell, Elly Den Hond, Ester Garne, Lucas Genard, Ana João Santos, L. Renée Lutke, Carlos Matias Dias, Christina Neergaard Pedersen, Amanda Neville, Annika Niemann, Ljubica Odak, Lucía Páramo-Rodríguez, Anna Pierini, Anke Rissmann, Joan K. Morris

*Bijbehorende auteur voor dit werk

    OnderzoeksoutputAcademicpeer review

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    Objective: To survey parents and carers of children with a congenital anomaly across Europe about their experiences of healthcare services and support during the COVID-19 pandemic.

    Design: Cross-sectional study.

    Setting: Online survey in 10 European countries, open from 8 March 2021 to 14 July 2021.

    Population: 1070 parents and carers of children aged 0-10 years with a cleft lip, spina bifida, congenital heart defect (CHD) requiring surgery and/or Down syndrome.

    Main outcome measures: Parental views about: the provision of care for their child (cancellation/postponement of appointments, virtual appointments, access to medication), the impact of disruptions to healthcare on their child's health and well-being, and satisfaction with support from medical sources, organisations and close relationships.

    Results: Disruptions to healthcare appointments were significantly higher (p<0.001) in the UK and Poland, with approximately two-thirds of participants reporting â € cancelled or postponed' tests (67/101; 256/389) and procedures compared with approximately 20% in Germany (13/74) and Belgium/Netherlands (11/55). A third of participants in the UK and Poland reported â € cancelled or postponed' surgeries (22/72; 98/266) compared with only 8% in Germany (5/64). In Poland, 43% (136/314) of parents reported that changes to their child's ongoing treatment had moderately to severely affected their child's health, significantly higher than all other countries (p<0.001). 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.

    Conclusion: A large proportion of participants reported disruptions to healthcare during the pandemic, which for some had a significant impact on their child's health. Regional differences in disruptions raise questions about the competence of certain healthcare systems to meet the needs of this vulnerable group of patients and indicate improvements should be strived for in some regions.

    Originele taal-2English
    Aantal pagina's13
    TijdschriftBMJ Open
    Nummer van het tijdschrift7
    StatusPublished - 19-jul.-2022

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