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 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.Popul...
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BMJ Publishing Group
2022-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/7/e061428.full |
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| author | 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 |
| author_facet | 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 |
| author_sort | Ingeborg Barisic |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-86d7e4d9fa0b47b98e1c2f7ad792bcf5 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-86d7e4d9fa0b47b98e1c2f7ad792bcf52025-01-31T18:15:12ZengBMJ Publishing GroupBMJ Open2044-60552022-07-0112710.1136/bmjopen-2022-061428COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare servicesIngeborg Barisic0Carlos Matias Dias1Amanda Neville2Anna Pierini3Anke Rissmann4Joan K Morris5Judith Rankin6Ester Garne7Anna Latos-Bielenska8Elena Marcus9Anna Jamry-Dziurla10Ljubica Odak11Clara Cavero- Carbonell12Elly Den Hond13Lucas Genard14Ana João Santos15L Renée Lutke16Christina Neergaard Pedersen17Annika Niemann18Lucía Páramo-Rodríguez193 Children’s Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, CroatiaDepartment of Epidemiology, National Institute of Health, Lisbon, Portugal10 Emilia Romagna Registry of Birth Defects and Center for Clinical and Epidemiological Research, University of Ferrara, Ferrara, Italy20 Tuscany Registry of Congenital Defects, National Research Council Institute of Clinical Physiology/Fondazione Toscana Gabriele Monasterio, Pisa, ItalyMalformation Monitoring Centre Saxony-Anhalt, Medical Faculty, Otto-von-Guericke University, Magdeburg, GermanyPopulation Health Research Institute, St George`s, University of London, London, UK1 Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, UKDepartment of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, DenmarkChair and Department of Medical Genetics, University of Medical Sciences, Poznan, PolandPopulation Health Research Institute, St George`s University of London, London, UKChair and Department of Medical Genetics, University of Medical Sciences, Poznan, PolandChildren`s Hospital Zagreb, Centre of Excellence for Reproductive and Regenerative Medicine, Medical School University of Zagreb, Zagreb, CroatiaRare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Valencia, SpainProvincial Institute for Hygiene, Antwerpen, BelgiumProvincial Institute for Hygiene, Antwerpen, BelgiumDepartment of Epidemiology, National Health Institute Doutor Ricardo Jorge, Lisboa, PortugalDepartment of Genetics, University Medical Center Groningen, Groningen, The NetherlandsDepartment of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, DenmarkMalformation Monitoring Centre Saxony-Anhalt, Medical Faculty Otto-von-Guericke University, Magdeburg, GermanyRare Diseases Research Unit, Fundacio per al Foment de la Investigacio Sanitaria i Biomedica, Valencia, SpainObjective 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.https://bmjopen.bmj.com/content/12/7/e061428.full |
| spellingShingle | 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 COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services BMJ Open |
| title | COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
| title_full | COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
| title_fullStr | COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
| title_full_unstemmed | COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
| title_short | COVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare services |
| title_sort | covid 19 and children with congenital anomalies a european survey of parents experiences of healthcare services |
| url | https://bmjopen.bmj.com/content/12/7/e061428.full |
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