In order to better understand the COVID pandemic effects on the care of PH patients and to help prepare for future challenges, a patient-centric survey has been started in the last days of May 2020.
We received a great present for our #WorldPHDay2021 celebration from the Orphanet Journal of Rare Disease (OJRD): the long awaited article on this PH CARE COVID survey has been published in the first days of May of 2021!
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.
The full article is available from here.
The survey is the result of the collaboration of all of the stakeholders: thanks to the effort of the fellow patients the English version has been translated into 19 languages so far.
Our partners in the medical field validated the questionnaires and provide the platform and the analysis capacities.
The initiative is supported by ERN-LUNG – European Reference Network for rare respiratory diseases and endorsed by European Respiratory Society, European Society of Cardiology and European Lung Foundation.
Please find more information about the process at: https://ern-lung.eu/portfolio-items/phcare-covid-survey/
We would like to thank the whole patient community again for the efforts to make it happen!