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

2022Journal article Open access
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dc.contributor.authorLatos-Bieleńska, Anna
dc.contributor.authorMarcus, Elena
dc.contributor.authorJamry-Dziurla, Anna
dc.contributor.authorRankin, Judith
dc.contributor.authorBarisic, Ingeborg
dc.contributor.authorCavero- Carbonell, Clara
dc.contributor.authorDen Hond, Elly
dc.contributor.authorGarne, Ester
dc.contributor.authorGenard, Lucas
dc.contributor.authorSantos, Ana João
dc.contributor.authorLutke, L Renée
dc.contributor.authorMatias Dias, Carlos
dc.contributor.authorNeergaard Pedersen, Christina
dc.contributor.authorNeville, Amanda
dc.contributor.authorNiemann, Annika
dc.contributor.authorOdak, Ljubica
dc.contributor.authorPáramo-Rodríguez, Lucía
dc.contributor.authorPierini, Anna
dc.contributor.authorRissmann, Anke
dc.contributor.authorMorris, Joan K.
dc.date.accessioned2023-01-25T14:48:28Z
dc.date.available2023-01-25T14:48:28Z
dc.date.issued2022
dc.description.abstractObjective: 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, openfrom 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.pt_PT
dc.description.sponsorshipThis project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement number 733001.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBMJ Open. 2022;12:e061428. doi:10.1136/bmjopen-2022-061428pt_PT
dc.identifier.doi10.1136/bmjopen-2022-061428pt_PT
dc.identifier.issn2044-6055
dc.identifier.urihttp://hdl.handle.net/10400.18/8459
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherBMJ Publishing Grouppt_PT
dc.relationEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
dc.relation.publisherversionhttps://bmjopen.bmj.com/content/12/7/e061428pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectCongenital Anomaliespt_PT
dc.subjectCOVID-19pt_PT
dc.subjectEuropean Surveypt_PT
dc.subjectEUROlinkCATpt_PT
dc.subjectEuropept_PT
dc.subjectRegisto Nacional de Anomalias Congénitaspt_PT
dc.subjectRENACpt_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.subjectObservação em Saúde e Vigilânciapt_PT
dc.titleCOVID-19 and children with congenital anomalies: a European survey of parents’ experiences of healthcare servicespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
oaire.awardURIinfo:eu-repo/grantAgreement/EC/H2020/733001/EU
oaire.citation.startPagee061428pt_PT
oaire.citation.titleBMJ Openpt_PT
oaire.citation.volume12pt_PT
oaire.fundingStreamH2020
person.familyNameCarvalho da Silva Santos
person.familyNameMatias Dias
person.givenNameAna João
person.givenNameCarlos
person.identifier.ciencia-id7E12-E842-1216
person.identifier.ciencia-id6311-6117-ADEB
person.identifier.orcid0000-0003-0556-5513
person.identifier.orcid0000-0002-0206-5874
person.identifier.ridI-6335-2012
person.identifier.scopus-author-id23103292400
project.funder.identifierhttp://doi.org/10.13039/501100008530
project.funder.nameEuropean Commission
rcaap.embargofctAcesso de acordo com página web do editor da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication7b015568-111e-4298-94af-90f1d3a958e4
relation.isAuthorOfPublicationfe9524e7-fc22-42f6-8eca-ab6a513ddd6b
relation.isAuthorOfPublication.latestForDiscoveryfe9524e7-fc22-42f6-8eca-ab6a513ddd6b
relation.isProjectOfPublication97315a90-2dd0-46d9-8b7d-4bd6174285f9
relation.isProjectOfPublication.latestForDiscovery97315a90-2dd0-46d9-8b7d-4bd6174285f9

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