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

Laurent Godinas,Joanna Pepke-Zaba,Anton Vonk Noordegraaf,Keerthana Iyer,Stephan Rosenkranz,Pavel Jansa,Rozenn Quarck,Catharina Belge,Senka Milutinov Ilic,Pilar Escribano-Subias,Gergely Meszaros,Abílio Reis,Michele D’Alto,Marc Humbert,Marion Delcroix,Olivier Sitbon,Milan Luknar

doi:10.1186/s13023-021-01752-1

Abstract

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.

Highlights

SARS-CoV-2 emerged in China at the end of 2019 causing coronavirus disease 2019 (COVID-19)
92% of the patients reported a diagnostic of Pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH)
Eleven percent of the patients denied receiving specific therapies, mostly corresponding to operated CTEPH patients, patients treated with calcium channel blockers, patients with ongoing diagnosis, and patients with pulmonary hyper‐ tension (PH) types other than group 1 or 4

Summary

Introduction

SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) emerged in China at the end of 2019 causing coronavirus disease 2019 (COVID-19). COVID-19 reached Europe in February 2020 resulting in a strict lockdown in most European countries between March and June 2020 During these three months, the healthcare systems encountered difficulties to ensure non-urgent care due to COVID-19 patient overload. A substantial part of outpatient consultations for patients with chronic or rare diseases were cancelled, with potential repercussions on their health status In the meantime, these patients were considered to be at risk for severe forms of COVID-19 due to their underlying condition, especially in the case of patients with cardio-pulmonary diseases. During the COVID-19 pandemic, most of the health care systems suspended their non-urgent activi‐ ties This included the cancellation of consultations for patients with rare diseases, such as severe pulmonary hyper‐ tension (PH), resulting in potential medication shortage and loss of follow-up. The aim of the study was to evalu‐ ate PH patient health status evolution, access to health care and mental health experience during the early phase of the pandemic

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