PH Care COVID Survey: An International Patient Survey on the Care for Pulmonary Hypertension Patients during the Early Phase of the COVID-19 Pandemic

PURPOSE: 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), accompanied by 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 internet 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 (PAH) and 15% of chronic thromboembolic PH (CTEPH). The COVID-19 related events were few: only 1% of all responders reported a diagnosis of COVID-19. However, the PH related events during the early phase of the pandemic seemed far more frequent with 8% of patients reporting health deterioration possibly related to PH, and 4% requiring hospitalization for PH care. 11% of the patients reported difficulties to have access to their PH expert center, and the reported rate of interruption of treatment due to shortage of medication was 3%. Both general practitioners and specialized PH centers were contacted by equal proportions of patients to seek COVID-19 related information. 67% of the participants reported anxiety or depression. CONCLUSION: Although COVID-19 incidence in PH patients was low during the early phase of the pandemic, PH related problems occurred frequently as the pandemic progressed with difficulties to have access to specialized care. Primary health care as well as to information on the impact of COVID-19 on people with PH. In addition to specialized care, primary health care was considered to be of importance by PH patients. Further studies are needed to evaluate the long-term consequences of COVID-related PH care disruption. The evaluation of long-term consequences of COVID related care disruption in PH will require further studies.