Hemophilia Results in Joint Pain in Young Adults

Pain and Joint Disease Impact Quality of Life of Young Adults (Ages 18-30) with Hemophilia (YA-PWH) 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.

In the US, 189 adults with hemophilia responded to the HERO study questionnaire, out of which 66 were young adult men aged 18-30 years. The median age of the young adult people with hemophilia (YA-PWH) who responded was 26 years. According to data presented at the National Hemophilia Foundation (NHF) 2014 Annual Meeting, the most common complications reported that were related to hemophilia were arthritis (41%), chronic pain (38%), viral infections (20%), psychological/psychiatric (30%), cardiovascular conditions (11%) and metabolic conditions (12%). Most YA-PWH reported moderate (68%) or extreme (5%) pain/discomfort, while anxiety/depression was reported as some/moderate by 33% and as extreme by 8%. In addition, 89% of them reported pain interference with daily activities in the past 4 weeks, with 5% reporting that it was extreme and 5% reporting quite a lot of pain. Furthermore, 26% of YA-PWH reported seeking psychosocial treatment in the previous 5 years and 71% of them reported this was related to their hemophilia.


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