Keywords
adherence
quality of life
hemophilia
real-world data
How to Cite
Abstract
Introduction. Hemophilia is a hereditary bleeding disorder that significantly affects the quality of life of patients and their caregivers. Methods. This study assessed the experiences of people with hemophilia and their caregivers in Argentina through an online survey and a face-to-face discussion. A total of 12 participants (7 patients and 5 caregivers) from different regions of the country were included. Key aspects such as diagnosis, treatment access, therapy adherence, emotional impact, and quality of life were analyzed. Results. Delays in diagnosis were identified, as well as barriers to medication access, and challenges in treatment adherence, influenced by treatment burden and lack of information on new therapies. One-third of participants reported frequent pain and recurrent bleeding episodes. Despite overall treatment acceptance, issues were identified regarding shared decision-making and the availability of emotional support. Discussion. These findings highlight the need to improve medical education, optimize medication access, and strengthen psychological and social support for people with hemophilia in Argentina.
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