Persons With Hemophilia of Generation Y and Their Relatives Attitudes and Expectations From Treatment

Abstract

This multicenter cohort study aimed to determine the attitudes and expectations of persons with hemophilia of Generation Y (PwH-Y) toward hemophilia and its treatment comparatively with the opinions of their non-hemophiliac relatives. The study was representative regarding quota-control variables of hemophiliacs registered to the provincial representatives of the Hemophilia Society of Turkey in 4 geographic regions and Istanbul. Sixty-four PwH-Y (62 males) and their 56 first-degree relatives (17 males; Generation X/baby boomers) were interviewed face-to-face using mixed data collection method. “Focus Group Study” method was used for qualitative data. Treatment adherence, requirements, and social activities were questioned with a semi-structured form. Treatment adherence rate of the PwH-Y (46.2%) was lower than that perceived by their relatives (71.4%) (p ≤ 0.05). Vascular access problems were the most common reasons for non-adherence (60% in PwH-Y and 25% in relatives). Among the components the hemophiliacs and their relatives needed most, support for accessibility of drugs/treatment ranked first (41.1% and 45%, respectively), followed by emotional support (26.1% and 32.5%, respectively). For increasing treatment success in PwH-Y, treatment should be personalized and shaped based on personal requirements.