Persons with Hemophilia of Generation Y and Their Relatives Attitudes and Expectations from Treatment

Abstract

Background: A “generation” is defined as a cohort of people born within a particular span of time and shaped by similar events, trends, or developments. Generation Y includes the people born between 1981 and 1999. This study aimed to determine the attitudes and behaviors of persons with hemophilia of Generation Y (PwH-Y) towards hemophilia and its treatment and their suggestions for the solutions regarding treatment problems comparatively with the opinions of their non-hemophiliac first-degree relatives and thus to provide information for healthcare workers about these problems. Methods: This multicenter cohort study included 64 PwH-Y and their 56 first-degree relatives. A face-to-face interview was performed using a mixed data collection technique. Findings: The rate of adherence to treatment reported by the PwH-Y (46·2%) was significantly lower than that perceived by their relatives (71·4%) (p≤0·05). Vascular access problems ranked first among the reasons for non-adherence to treatment (60% in the PwH-Y and 25% in their relatives). Among the components that the hemophiliacs and their relatives need most, support for accessibility of drugs and treatment ranked first and followed by emotional support both in the PwH-Y (41·1% and 26·1%, respectively) and in their relatives (45% and 32·5%, respectively). Interpretation: Hemophiliacs and their relatives should be supported according to their requirements to maximize hemophilia treatment success. The most comprehensive step would be enabling “Hemophilia Treatment Centers”, where a multidisciplinary team that would be in close contact with PwH-Y and their relatives, provides care, and works under the leadership of an experienced hematologist. Funding: The authors received no financial support for the research, authorship, and/or publication of this article. Declaration of Interests: Bulent Zulfikar has acted in advisory board and/or provided consultancy for Pfizer, Shire, Novo Nordisk, Roche, Sobi, Bayer, and BioMarin and reports personal fees outside the submitted work. The other authors declare that there is no conflict of interest. Ethics Approval Statement: The study was approved by the Ethics Committee of Istanbul Arel University (decision number: 2017/02, date: 24/3/2017). All patients and their relatives provided informed consent for participation in the study.