Impact of Hemophilia on Young Adults in HERO Study

Hemophilia Impacts Employment, Relationships, and Quality of Life in Young Adults in the US

AMCP 2015 (San Diego, April 7-10) HERO (Hemophilia Experiences, Results and Opportunities) is an international initiative aiming to build a comprehensive understanding of life with hemophilia as seen from the perspective of people with hemophilia, their families and their healthcare providers. The HERO quantitative study was performed in over 1200 patients/caregivers in 10 countries including the US and consisted of separate internet questionnaires for US adult patients and caregivers of affected children.

According to data presented at Association of Managed Care Pharmacists (AMCP) 2015 Meeting, 189 US adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years. About half of them reported using routine prophylaxis and only 27% of them used the treatment medication as prescribed. In addition, 26% cited difficulty with availability or access to clotting factor in the past 5 years, out of which 82% cited financial issued in accessing it. The most commonly reported complications included arthritis (41%), chronic pain (38%), moderate/extreme pain/discomfort (73%) and moderate/extreme anxiety/depression (41%). Eighty nine percent of the young adult people with hemophilia (YA-PWH) reported pain interference with daily activities in the past 4 weeks. Most of them were employed (78%) with 74% reporting a negative impact of hemophilia on employment and 39% reporting moderate/very large impact. Twenty percent of these patients were disabled, while only 14% received disability benefits. Furthermore, 21% of them reported difficulty in visiting an HTC with key issues identified as accessibility (79%), distance (57%), travel time (29%) and inability to get off work (50%). Only 32% of YA-PWH were married or in long-term relationships; 9% had children and 77% wanted to have children. These patients also reported hemophilia having a negative impact on their relationships (32%), with 62% predicting a future negative impact and 52% worried about supporting a family. Of the YA-PWH reporting most/all of their friends knowing about their hemophilia (59%), many have received negative reactions upon telling friends about their hemophilia (41%).


The HERO study (NCT01322620) was sponsored by Novo Nordisk A/S