The Ispor Scientific Presentations Database

ISPOR 22nd Annual International Meeting
Boston, MA, USA
May, 2017
PHS98
Hematological Disorders
Patient-Reported Outcomes & Patient Preference Studies (PRO)
Patient/Social Preference (PP)
“WHAT MATTERS IN HEMOPHILIA” – A QUANTITATIVE SURVEY OF PEOPLE LIVING WITH OR CARING FOR SOMEONE WITH HEMOPHILIA
Yang K1, Weston SB1, Schneider BR2, Peacock E2, Buckley BC1
1Biogen, Weston, MA, USA, 2MyHealthTeams, San Francisco, CA, USA
OBJECTIVES:  A quantitative patient study was conducted to better understand symptoms experienced, quality of care, and overall impact of Hemophilia. METHODS:  An email invitation was sent to all U.S. members of MyHemophiliaTeam, a social network of 890 people diagnosed with or caring for someone with Hemophilia. In total, 47 members responded to a 16 question survey between July 18 and August 10, 2016. RESULTS: Both adults and children with hemophilia are impacted well beyond bleeding episodes. In fact, 65% of adults rank depression as having as much of an impact on their daily lives as bleeding. General pain (57% of adults, 30% of children) and physical limitations (57%, 15%) are also quite prevalent. Respondents are generally satisfied with management of bleeds (60% for adults, 85% for children), but there is dissatisfaction with how their other symptoms are being treated. Respondents indicate their depression/anxiety is not being addressed (87%, 86%), and pain is not being well managed (62%, 83%). Many also described the care provided by their multiple providers (HTCs, doctors, nurses, etc.) as not well coordinated (55%, 39%). Parents worry about their child’s future and ability to have a “normal” life and are burdened by its impact on their children and their own time/careers. Many have struggled to be financially secure and some adults with hemophilia still feel the stigma from the HIV/Hep C tainted blood issues. CONCLUSIONS: People with hemophilia responded that their bleeding episodes are under control, however, their depression, anxiety and pain are not being properly treated. There is an opportunity to provide a more holistic, coordinated approach to treating hemophilia and associated symptoms in this community. Understanding the range of symptoms and the impact in totality will better allow medical professionals to treat individual with hemophilia more effectively.