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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

  • Godinas, Laurent1, 2
  • Iyer, Keerthana3, 4, 5
  • Meszaros, Gergely6
  • Quarck, Rozenn1, 2
  • Escribano-Subias, Pilar7
  • Vonk Noordegraaf, Anton8
  • Jansa, Pavel9
  • D’Alto, Michele10
  • Luknar, Milan11
  • Milutinov Ilic, Senka12
  • Belge, Catharina1, 2
  • Sitbon, Olivier3, 4, 5
  • Reis, Abílio13
  • Rosenkranz, Stephan14
  • Pepke-Zaba, Joanna15
  • Humbert, Marc3, 4, 5
  • Delcroix, Marion1, 2
  • 1 University Hospitals Leuven, Leuven, Belgium , Leuven (Belgium)
  • 2 KU Leuven - University of Leuven, Leuven, Belgium , Leuven (Belgium)
  • 3 Université Paris-Saclay, Le Kremlin Bicêtre, France , Le Kremlin Bicêtre (France)
  • 4 Hôpital Bicêtre, Le Kremlin Bicêtre, France , Le Kremlin Bicêtre (France)
  • 5 Hôpital Marie Lannelongue, Le Plessis Robinson, France , Le Plessis Robinson (France)
  • 6 European Pulmonary Hypertension Association, Vienna, Austria , Vienna (Austria)
  • 7 Hospital Universitario, 12 de Octubre, Madrid, Spain , Madrid (Spain)
  • 8 Vrije Universiteit Amsterdam, Amsterdam UMC, De Boelelaan 1117, Amsterdam, Netherlands , Amsterdam (Netherlands)
  • 9 Charles University and General University Hospital, Prague, Czech Republic , Prague (Czechia)
  • 10 Monaldi Hospital, Naples, Italy , Naples (Italy)
  • 11 Comenius University School of Medicine, Pod Krasnou Horkou 1, Bratislava, Slovakia , Bratislava (Slovakia)
  • 12 Institute for Pulmonary Diseases of Vojvodina, Sremska Kamenica, Serbia , Sremska Kamenica (Serbia)
  • 13 Centro Hospitalar Universitário Do Porto, Porto, Portugal , Porto (Portugal)
  • 14 Cologne University Heart Center, Cologne, Germany , Cologne (Germany)
  • 15 Royal Papworth Hospital, Cambridge, UK , Cambridge (United Kingdom)
Published Article
Orphanet Journal of Rare Diseases
Springer (Biomed Central Ltd.)
Publication Date
May 01, 2021
DOI: 10.1186/s13023-021-01752-1
Springer Nature


BackgroundDuring 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.MethodsWe 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.Results1073 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.ConclusionAlthough 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.

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