Quality of life of adults with hemophilia in Croatia – Medical and psychosocial aspects

Hemophilia is a rare disease characterized by numerous medical and psychosocial specificities. Researches that would analyze these specifics in more detail are still relatively rare and have mostly been conducted in developed countries where the standard of medical care for people with hemophilia is extremely high. Many of these studies are of a partial nature, i.e. they concentrate primarily on some specific aspects of life with hemophilia, so that on a global level, very little is still known about numerous segments of life with this disease. The main goal of the project is to gain a more complete insight into the medical and psychosocial aspects of life with hemophilia. On the basis of previous findings from international studies, as well as previous research conducted in Croatia, the aim of the new research is to systematize and supplement empirical knowledge and to detect real characteristics of the quality of life of people with hemophilia in Croatia. In doing so, emphasis would be placed on objective, but also on subjective quality of life indicators, which would provide a clear basis for future and concrete actions in the direction of raising the quality of this population. At the same time, the research would provide clear guidelines for future research, not only among people with hemophilia but also among people living with various other rare and chronic diseases.