Impact of the COVID-19 Pandemic on People with Hemophilia and von Willebrand Disease

ČSH

The opinions and needs of our members are important to us, which is why we created an online questionnaire on the topic of the Impact of the Pandemic on the Community of People with Hemophilia and von Willebrand Disease, in collaboration with clinical psychologist Mgr. Petra Buckova. The questionnaire was distributed in December 2020 and was completed by 81 respondents. The aim was to obtain information on whether members would appreciate more intensive targeted support and assistance. We are publishing the survey results on the occasion of World Hemophilia Day, which is commemorated annually on 17 April.

Hemophilia is a chronic, genetically determined disease that affects blood clotting. Those affected depend on treatment for their entire lives. The past year, the period of the COVID-19 pandemic, has been extraordinary for everyone, including people with hemophilia. In addition to the everyday concerns faced by most residents of the Czech Republic, such as the disease itself, uncertainty, and the impact of anti-epidemic measures, patients with hemophilia deal with specific worries such as concerns about disruptions in drug supplies, the interaction between COVID-19 and hemophilia, and the vulnerability of patients with immune disorders.

In this context, the assistance provided by the patient organizations Czech Hemophilia Society and Hemojunior proved invaluable. They understand the needs of their members and respond flexibly. In May and November 2020, they organized webinars for their members with experts in hematology, physiotherapy, genetics, and psychology, where participants could obtain and share information about the disease and recommended adaptation strategies.

The results show that people with hemophilia feel safe. Respondents do not feel limited in their access to healthcare. Patient organizations helped deliver medications to patients in isolation in remote areas. Patients feel safe with regard to COVID-19. Only 10% of respondents reported concerns about the impact on their health, while 80% of respondents feel less frustrated by the disease itself than by the restrictions and limitations. The most important and effective coping strategies include maintaining social contact, a positive attitude, and an active lifestyle. We can say that the Czech community of people with blood clotting disorders demonstrates a high degree of resilience. 45% of respondents reported positive impacts of the pandemic, such as personal growth, skill development, or the development of social relationships. At the same time, it is important to take seriously the fact that 20% of respondents feel overwhelmed by stress and resource depletion (physical, psychological, financial). This is a threatening factor for people with chronic illness. These respondents deserve targeted psychosocial care. However, such care is not available everywhere. Indeed, 20% of respondents reported that they were unable to find psychosocial care when they needed it. When asked what would help our community overcome another wave of the pandemic, a clear majority of respondents, nearly 60%, answered that what can help us most is an attitude of personal responsibility and solidarity with others, while only 15% of respondents cited government decisions. The results can be summarized as follows: in the community of patients with blood clotting disorders, we observe a high degree of resilience and personal responsibility for overcoming obstacles, which may be a positive consequence of the systematic and long-term process of coping with the daily burden associated with chronic illness. The research results were presented at the international EAHAD congress in February 2021.

Mgr. Petra Buckova