Hemophilia Impacts Young Adult Relationships & Employment

Hemophilia Impacts Relationships and Employment of Young Adults in the United States in the HERO Study

NHF 2014 (Washington DC, September 18-20) 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 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. The results of the analysis of young adult patients with hemophilia in the US responding to the study were presented at the National Hemophilia Foundation (NHF) 2014 Annual Meeting.

In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 (median: 26) years. About one third of YA-PWH were married (32%) or in long-term relationships. Few of them lived alone (20%), but most lived with wife/partner (32%), family members (21%) or others (27%). In addition, 32% of them reported that hemophilia impacted their ability to develop close relationships with a partner or a prospective partner. Of the YA-PWH reporting most/all of their friends knew about their hemophilia (59%), many reported their friends having some negative reactions when told about their diagnosis (41%). Furthermore, about 9% of them already had children and 77% wanted to have children. Most of them (78%) were employed and reported office work (57%). Seventy four percent of the YA-PWH reported hemophilia had a negative impact on their employment and 39% reported moderate/very large impact. Additionally, 20% of them were disabled and 14% received disability benefits.

 

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