Abstract Topic: 33. Bleeding disorders (congenital and acquired)
Background: The Liberate Life® project aims to provide support and information to patients with haemophilia (PwH) and limit the impact of haemophilia on their quality of life. The impact of coronavirus disease 2019 (COVID-19) on PwH is poorly understood. Despite vaccination being unanimously recommended, PwH or their caregivers may be vaccine-hesitant. Therefore, gaining a deeper understanding of PwH and their caregivers’ experiences with COVID-19 infection and vaccination offers an opportunity to improve patient-oriented information and education.
Aims: To gain insight about the preferences and concerns of PwH and their caregivers regarding COVID-19 infection and vaccination in Central and Eastern Europe.
Methods: The Liberate Life survey was sponsored by Swedish Orphan Biovitrum (Bratislava, Slovakia) and administered online using the TypeForm™ platform in Bulgaria, Croatia, the Czech Republic, Hungary, Romania, Slovakia and Slovenia. Data collection was performed using Surveysparrow® from 14 February–01 March 2022. Adults and children with haemophilia A or B of any severity and/or their caregivers were eligible to participate in this survey. The survey results are reported using descriptive statistics.
Results: Survey respondents (N=274) were either PwH (n=170) or their caregivers (n=104). The majority of respondents did not have a polymerase chain reaction-confirmed COVID-19 infection (57%), and only one respondent was hospitalised because of COVID-19 (<1%). PwH were mostly vaccinated against COVID-19 (80%). Compared with PwH respondents, almost twice as many caregiver respondents had concerns about COVID-19 vaccination (35% versus 19%, respectively). Blood clots (46%) and bleeding risk (32%) were identified as the most common concerns about vaccination.
Summary/Conclusion: Most PwH are vaccinated against COVID-19, and concerns around vaccination are notable for caregivers of PwH as well as PwH. This may represent an opportunity for further education.
Keywords: Hemophilia A, COVID-19, Hemophilia B, Vaccination