COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services
Ingeborg Barisic,
Carlos Matias Dias,
Amanda Neville,
Anna Pierini,
Anke Rissmann,
Joan K Morris,
Judith Rankin,
Ester Garne,
Anna Latos-Bielenska,
Elena Marcus,
Anna Jamry-Dziurla,
Ljubica Odak,
Clara Cavero- Carbonell,
Elly Den Hond,
Lucas Genard,
Ana João Santos,
L Renée Lutke,
Christina Neergaard Pedersen,
Annika Niemann,
Lucía Páramo-Rodríguez
Affiliations
Ingeborg Barisic
Centre of Excellence for Reproductive and Regenerative Medicine, Children`s Hospital Zagreb, Medical School University of Zagreb, Zagreb, Croatia
Carlos Matias Dias
Department of Epidemiology, National Institute of Health, Lisbon, Portugal
Amanda Neville
IMER Registry (Emilia Romagna Registry of Birth Defects), Centre for Clinical and Epidemiological Research, University of Ferrara, Ferrara, Emilia-Romagna, Italy
Anna Pierini
Institute of Clinical Physiology National Research Council, Pisa, Italy
Anke Rissmann
Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke-University Magdeburg, Magdeburg, Germany
Joan K Morris
Population Health Research Institute, St George`s University of London, London, UK
Judith Rankin
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UK
Ester Garne
Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark
Anna Latos-Bielenska
Chair and Department of Medical Genetics, University of Medical Sciences, Poznan, Poland
Elena Marcus
Population Health Research Institute, St George`s University of London, London, UK
Anna Jamry-Dziurla
Chair and Department of Medical Genetics, University of Medical Sciences, Poznan, Poland
Ljubica Odak
Children`s Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, Croatia
Clara Cavero- Carbonell
6 Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Valencia, Spain
Elly Den Hond
Provincial Institute for Hygiene, Antwerpen, Belgium
Lucas Genard
Provincial Institute for Hygiene, Antwerpen, Belgium
Ana João Santos
Department of Epidemiology, National Health Institute Doutor Ricardo Jorge, Lisboa, Portugal
L Renée Lutke
Department of Genetics, University Medical Center Groningen, Groningen, The Netherlands
Christina Neergaard Pedersen
Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark
Annika Niemann
Malformation Monitoring Centre Saxony-Anhalt, Medical Faculty Otto-von-Guericke University, Magdeburg, Germany
Lucía Páramo-Rodríguez
Rare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Valencia, Spain
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 ‘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 ‘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.
