Psychosocial impact of covid19 pandemic on people with haemophilia and their concerns beyond the risk of infection

ABSTRACT

Aims & Objectives: The worldwide SARSCoV2 pandemic can lead to either respiratory infection or isolation due to containment zones that produce a significant impact on chronic diseases such as inherited bleeding disorders-Haemophilia. The aim of the study was to evaluate the impact of COVID19 pandemic on patients with Haemophilia, regarding their psychosocial issues and financial concerns. Patients/Materials & Methods: A survey evaluating the impact of COVID19 pandemic on psychosocial health of people with Haemophilia was done. A questionnaire was developed for the survey that was taken up by 70 out of 100 new patients attending the Haemophilia day care center, Lok Nayak Hospital, Delhi during a two-month period from 1-6-2020 to 31-7-2020. The survey included information on demographic and clinical data, needs, psychosocial issues, financial concerns and experiences regarding medical care during COVID19 pandemic. Results: In total, 73 patients with Haemophilia completed the survey (73% response rate). Most patients suffered from Haemophilia A (73%) while the others had Haemophilia B (37%). 85% of the patients had psychosocial concerns which included insecurity regarding accessibility of factors in case of bleeding episodes, support and availability of the Haemophilia center personnel for assistance. Patients were also anxious and frustrated about regular drug production and supply. 68% of the patients had financial concerns which not only involved the fear of decreased earning hands in the family due to pandemic but mainly involved the fear of inaccessibility of appointments and cost-free factors in the government hospitals that have got converted into designated COVID centers. 74% of the patients had social concerns regarding the containment-associated isolation zones due to which the patients were not able to freely avail the medical services as and when required. Discussion & Conclusion: The corona virus pandemic has impact on patients with bleeding disorders such as Haemophilia in terms of thoughts and worries related to their underlying disease, accessibility and availability of affordable medical care and feelings caused by the coronavirus pandemic in general. Also, caregivers of these patients are equally concerned. Counselling and reassurance about COVID19 awareness and precautions among Haemophilia patients may reduce their worries and concerns. Because longterm effects of the pandemic on psychosocial health and financial burden on these patients are unknown, they should be examined in the followup.