Generation Y, also known as millennials, include people born between 1981 and 1999.1 The members of Generation Y differ significantly from those of other generations in several domains, including openness to change, dependence on internet and technology, and tendency for globalization and self-management.2,3 As such, evaluation of the perception, attitudes and behaviors of patients with hemophilia from Generation Y could have important implications for the success of hemophilia treatment.1
In a study published in Clinical and Applied Thrombosis/Hemostasis, Bulent Zulfikar, MD, of the department of pediatric hematology/oncology at Istanbul University Oncology Institute in Istanbul, Turkey, and co-authors evaluated the attitudes and behaviors of patients with hemophilia from Generation Y (PwH-Y) toward hemophilia treatment and compared them with the opinions of individuals from different generations, including their first-degree relatives.1
“For success in the management of PwH-Y, which accounts for a substantial proportion of the [patients with hemophilia] population, it is important to recognize [Generation Y], to know its characteristics, and to be in agreement and cooperation [with its members],” Dr Zulfikar and his colleagues wrote.
The researchers conducted a multicenter cohort study that included 64 PwH-Y and 56 first-degree relatives without hemophilia, of which the majority were from Generation X (1961-1980) or Baby-Boomers (1946-1960). Study participants were interviewed face-to-face using a mixed data collection method. Qualitative data was collected using the “Focus Group Study” method and a total of 15 group studies were performed.
Following the interviews, a semi-structured questionnaire was also completed by each participant; the questionnaire included questions about treatment adherence, primary requirements, and daily social activities. The PwH-Y and their relatives specified their level of agreement independently for each statement using a 10-point scale.
Among the cohort, 96.9% of PwH-Y were male. The majority of PwH-Y had hemophilia A (82.8%) and 87.5% had severe disease; all patients with severe type hemophilia (including 3 patients with inhibitors) were receiving a prophylactic factor.
After analysis, the researchers found that 87.5% of the patients were enrolled in a prophylaxis program at a treatment center; however, only 46.2% of the PwH-Y reported that they received regular infusion for prophylaxis 2-3 times weekly and 71.4% of their relatives reported that the PwH-Y were adherent to treatment (P ≤.05).
Vascular access problems (60% in PwH-Y and 25% in relatives) was the most frequently reported reason for nonadherence to regular prophylaxis, followed by treatment process-emotional difficulties (16.9% and 8.9%, respectively), and difficulties related to drug accessibility (15.4% and 17.9%, respectively). Support for accessibility of drugs or treatment (41.1% and 45%, respectively) and emotional support (26.1% and 32.5%, respectively) were identified as areas of unmet need.
“The main reasons for non-adherence to treatment among European [adolescent patients with hemophilia] are forgetfulness and not being able to spare enough time for treatment,” the researchers wrote. “In our study, vascular access problems, as well as the difficulties concerning accessibility of drugs, were reported by the patients as the main reasons for non-adherence to treatment.” They continued by stating, “[Patients with hemophilia] of Generation Y do not pay enough attention to the continuity of prophylaxis, which is the gold standard.”
“While this study was conducted in Turkey, these trends also hold true in U.S.-based clinical practice,” commented Guy Young, MD, director of the hemostasis and thrombosis program at Children’s Hospital Los Angeles in an email interview.
“In order to increase the [chances of] success for PwH-Y, [hemophilia] treatment should be personalized and shaped based on personal requirements,” the researchers concluded.
Disclosure: Some guideline authors have declared affiliations with or received funding from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.
1. Zulfikar B, Koc B, Gumustas I, Zulfikar H. Persons with hemophilia of Generation Y and their relatives attitudes and expectations from treatment. Clin Appl Thromb Hemost. 2021;27:10760296211000131. doi:10.1177/10760296211000131
2. Bolton RN, Parasuraman A, Hoefnagels A, et al. Understanding generation Y and their use of social media: a review and research agenda. J Serv Manag. 2013;24(3):245-267. doi:10.1108/09564231311326987
3. Twenge JM, Campbell SM. Generational differences in psychological traits and their impact on the workplace. J Manag Psychol. 2008;23(8):862-877. doi:10.1108/02683940810904367