During the COVID-19 pandemic, many health care systems suspended their non-urgent activities. Pulmonary Hypertension patients were subjected to the same rules as other patients during the COVID-19 pandemic, with no prioritised care despite their rare and severe condition. A consortium composed of pulmonary hypertension patient associations and scientific societies was created to launch the PH-CARE-COVID survey, an international patient survey available in 16 languages, designed to collect information on patients’ lived experience and to understand how care was provided (or not) during the pandemic-related lockdown.
The Consortium was composed of the European Pulmonary Hypertension Association (PHA Europe), the European Reference Network for rare lung diseases (ERN-LUNG), the European Respiratory Society (ERS) Assembly 13 on Pulmonary Vascular Diseases, the ERS Clinical Research Collaboration PHAROS, the European Lung Foundation (ELF) and the European Society of Cardiology (ESC) Working Group on Pulmonary Circulation & Right Ventricular Function.
The survey was conducted with1,073 patients (or relatives, 27%) from 52 countries all over the world between 22/05/2020 and 28/06/2020.
The full article can be viewed at this link on the Orphanet Journal of Rare Diseases
Godinas, 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 16, 196 (2021). https://doi.org/10.1186/s13023-021-01752-1