RESUMO
BACKGROUND: Sufficient supply of coagulation factors products has significantly improved life quality and expectancy in patients with hemophilia. Certain difficulties, however, persist when it comes to the treatment of the disease. AIM: To analyze current therapeutic approaches and identify major unsolved issues in the treatment of patients with hemophilia A. MATERIALS AND METHODS: An online survey of 100 adult patients with hemophilia A was held. RESULTS: More than a half of the surveyed sample (59%) are patients aged 19 to 40 with the severe form of the disease, 73% of respondents receive a replacement therapy with plasmatic factors, 42% of patients inject drugs 3 times a week or more. More than a half of all age groups with hemophilia have persistent pain and limited joint mobility, in 70% of the patients, bleeding into the joints occurred 4 or more times within the past year, 47% of the patients with hemophilia A are partially satisfied or dissatisfied with their state of health, 92% of the patients would like to improve their quality of life. At the same time, about 1/3 of the patients would like to reduce the frequency of drug administration. More than 40% of the respondents did not visit a hematologist during the year, 85% do not conduct regular laboratory monitoring. CONCLUSION: The survey results demonstrate numerous areas of potential change pertaining to the approaches towards therapy and to the innovative drugs for the treatment of patients with hemophilia.
