Introduction: Hemophilia is a rare hereditary disease that mainly affects men and is
linked to the X chromosome. The result is a lack of coagulation factor VIII or IX and a
tendency to bleed. It is divided into hemophilia A and B, and according to the severity of
the disease, into mild, moderate and severe forms of hemophilia. It is accompanied by
spontaneous bleeding into the joints and muscles. The disease is treated prophylactically
or, if necessary, by adding the missing coagulation factor. The most common consequence
is hemophilic arthrosis, which is the result of bleeding into the joints. Purpose: We wanted
to determine the adherence to treatment of adult patients with hemophilia in Slovenia and
their quality of life. In addition, we determined the disease characteristics of hemophilia
patients in Slovenia and their lifestyle. Purpose: We wanted to determine the adherence to
treatment of adult patients with hemophilia in Slovenia and their quality of life. In addition,
we determined the disease characteristics of hemophilia patients in Slovenia and their
lifestyle. Methods: The theoretical starting points for the diploma work were searched in
the literature from the Medline, Cinahl, UpToDate, Pub Med collections and with the
Google Scholar browser. We included 36 adult patients with moderate and severe
hemophilia in Slovenia, aged between 22 and 73 years. In the research work, we used two
verified questionnaires, VERITAS-PRO and SF-36. With VERITAS-PRO we measured
adherence to treatment in six dimensions and with SF-36 quality of life with 36 statements.
We presented the obtained data with descriptive statistics. Results: Adherence to the
treatment of patients with hemophilia is good on all six dimensions. The best adherence
was found in dosing and the worst, but still good, in communication. Only one of the
surveyed patients was non-adherent, as he had a score above the threshold value (57).
Patients rate their quality of life as poor. On average, mental health is rated better than
physical health. Discussion and conclusion: Adult patients with hemophilia have good
adherence to treatment, but despite this, they rate the quality of life in terms of health as
poor. The results deviate from the results of some other studies, where the scores for the
quality of life are higher or lower. What they all have in common is that patients rate their
quality of life better in terms of mental health compared to physical health. The reason for
the worse quality of life in relation to health could be that they did not receive adequate
treatment in childhood, as it did not exist then.
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