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PH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic

2021Journal article Open access
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dc.contributor.authorGodinas, Laurent
dc.contributor.authorIyer, Keerthana
dc.contributor.authorMeszaros, Gergely
dc.contributor.authorQuarck, Rozenn
dc.contributor.authorEscribano-Subias, Pilar
dc.contributor.authorVonk Noordegraaf, Anton
dc.contributor.authorJansa, Pavel
dc.contributor.authorD’Alto, Michele
dc.contributor.authorLuknar, Milan
dc.contributor.authorMilutinov Ilic, Senka
dc.contributor.authorBelge, Catharina
dc.contributor.authorSitbon, Olivier
dc.contributor.authorReis, Abilio
dc.contributor.authorRosenkranz, Stephan
dc.contributor.authorPepke-Zaba, Joanna
dc.contributor.authorHumbert, Marc
dc.contributor.authorDelcroix, Marion
dc.date.accessioned2023-10-30T15:54:59Z
dc.date.available2023-10-30T15:54:59Z
dc.date.issued2021
dc.description.abstractBackground: During the COVID-19 pandemic, most of the health care systems suspended their non-urgent activities. This included the cancellation of consultations for patients with rare diseases, such as severe pulmonary hypertension (PH), resulting in potential medication shortage and loss of follow-up. Thus, the aim of the study was to evaluate PH patient health status evolution, access to health care and mental health experience during the early phase of the pandemic. Methods: We conducted an online patient survey, available in 16 languages, between 22/05/2020 and 28/06/2020. The survey included questions corresponding to demographic, COVID-19 and PH related information. Results: 1073 patients (or relatives, 27%) from 52 countries all over the world participated in the survey. Seventy-seven percent (77%) of responders reported a diagnosis of pulmonary arterial hypertension and 15% of chronic thromboembolic PH. The COVID-19 related events were few: only 1% of all responders reported a diagnosis of COVID-19. However, 8% of patients reported health deterioration possibly related to PH, and 4% hospitalization for PH. Besides, 11% of the patients reported difficulties to access their PH expert centre, and 3% interruption of treatment due to shortage of medication. Anxiety or depression was reported by 67% of the participants. Conclusion: Although COVID-19 incidence in PH patients was low, PH related problems occurred frequently as the pandemic progressed, including difficulties to have access to specialized care. The importance of primary health care was emphasized. Further studies are needed to evaluate the long-term consequences of COVID-related PH care disruption.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationGodinas L, Iyer K, Meszaros G, et al. PH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic. Orphanet J Rare Dis. 2021;16(1):196. doi:10.1186/s13023-021-01752-1pt_PT
dc.identifier.doi10.1186/s13023-021-01752-1pt_PT
dc.identifier.issn1750-1172
dc.identifier.urihttp://hdl.handle.net/10400.16/2860
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherBioMed Centralpt_PT
dc.relation.publisherversionhttps://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01752-1pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/pt_PT
dc.subjectCOVID-19pt_PT
dc.subjectChronic thromboembolic pulmonary hypertensionpt_PT
dc.subjectPatient surveypt_PT
dc.subjectPulmonary arterial hypertensionpt_PT
dc.subjectPulmonary hypertensionpt_PT
dc.titlePH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemicpt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceEnglandpt_PT
oaire.citation.issue1pt_PT
oaire.citation.startPage196pt_PT
oaire.citation.titleOrphanet Journal of Rare Diseasespt_PT
oaire.citation.volume16pt_PT
person.familyNameReis
person.givenNameAbilio
person.identifier.ciencia-idBC10-897E-BE36
person.identifier.orcid0000-0002-9932-3736
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublication7d29e98e-2f00-4d1f-ad29-8ac1b93bb61d
relation.isAuthorOfPublication.latestForDiscovery7d29e98e-2f00-4d1f-ad29-8ac1b93bb61d

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