ABSTRACT
Introduction: COVID-19 has had a significant impact on all aspects of pulmonary arterial hypertension (PAH), from diagnosis and management to an increased risk of death in patients with PAH. Pandemic made it necessary to revisit the manner in which patients receive care to decrease risk of contracting the virus. Methods: Eight Tertiary Paediatric Centres participating in the paediatric arm of the registry Database of Pulmonary Hypertension in the Polish Population (BNP-PL) took part in this multi-centre cross-sectional observational study. Eligible children were diagnosed with PAH before March 20, 2020, the day the pandemic was officially announced by the Polish government. All parents of children with PAH in the BNP-PL were invited to take part in an anonymous electronic questionnaire. It comprised of several question panels: demographic data, fear of COVID-19 and other pandemic related problems, standard anxiety scale (GAD-7), presence of alarming symptoms, which had appeared or exacerbated since March 20, 2020. Data collection was seized on the September 09, 2020. Results: We have received 62 responses (response rate 77%), 4 were incomplete. The remaining 58 were further analysed. Ninety-five percent of the responders were women (n=55) at a median age of 41 years. Ninety-five percent of the parents were afraid of possible negative consequences of the SARS-CoV-2 on their children's health including death in 77%. Sixty to 71% of the parents were also afraid of various potential problems resulting from re-organising health-care system. As a result, 72% of parents had symptoms of anxiety as assessed by GAD-7, noticeably 34% in moderate-tosevere degree. No cases of COVID-19 were reported in the studied group of children. Conclusions: The impact of COVID-19 on health care delivery and on society at large is going to be felt for years to come. This information is vital to provide prognostic information on cardiac health after COVID-19, to inform long-term clinical care pathways, and to guide lifestyle recommendations. COVID-19 pandemic had an overall negative impact on children with PAH and their families. Several risk factors for poor outcome were identified. Long-term strategies should be validated and implemented to deliver quality care for children with PAH, with emphasis on psychosocial well-being.