Follow-up and Treatment Expectancy and Compliance of Y-Generation Hemophiliacs

Introduction: Generation is called for the human community, which is born in the same time frame, shaped by similar events, tendencies or developments. Y-generation; born between 1981-1999, 40% of our country's population, are the most active community of labor life. There are 4860 Hemophilia A and 878 Hemophilia B patients in our country and 45% of them are members of Y-generation. Compliance is the most important problem in the management of this congenital bleeding disorder. It is necessary to recognize, understand, communicate and cooperate with Y-generation PwHs.

Materials and Methods: In our multicentre cohort study, between November 2016 and May 2017, 65 Y-generation PwHs and 56 caregivers (totally 121) were included and the focus groups were conducted with face to face interviews.

Results: While the rate of regular prophylaxis remained at 46% in the answers given by the PwHs individuals, their caregivers reported it as 71% which is significantly different. Intravenous administration and other physical difficulties respectively were reported as major problems for not doing prophylaxis regularly by PwHs and their caregivers (60% and 25%). The other reported problems are supply of medication (15% and 18%), treatment periods and emotional support (17% and 9%). It has been identified that the items Y-generation PwHs and their caregivers most need are; medication and treatment support, emotional support, social inclusion, financial support, and specialized centers (HTC) that offer hemophilia management like hemophilia treatment centers, respectively. When the usage of social media was questioned, for PwHs and their caregivers, it was found that; Facebook was 85% - 55%, Instagram was 83% - 32% and Youtube was 74% - 21%.

Discussion: Y-generation PwHs, do not show sufficient care to maintain the gold standard prophylaxis. To be successful, the treatment should be individualized, the life conditions and activities of the patient should be taken into account and the patient should be included in the decision making. Considering Y-generation PwHs and their caregivers priorly requests for support for accesing medication and treatment in our country.; it is important to underline that it should not be the only purpose in the management and adequate education is necessary for the comprehensive care. In this respect, it will enable a more active life and the time-spent outside the house, for social activities like sports and travelling will increase.

In conclusion; It is important to understand, negotiate and cooperate with Y-generation PwHs in order to be successful in the management of the disease. In order to emphasize the contribution of prophylaxis on quality of life, the number of educational platforms (camps, meetings, etc.) where PwHs and their caregivers can reach the right information, should be increased and; primarly, multidisciplinary Hemophilia Treatment Centers should be established under the leadership of a hematologist.