Understanding Treatment and Care Utilization & Perceptions of Females with Hemophilia A or B in the CHOICE Project
Hemophilia A or B in the CHOICE Project
ASH 2017 (Atlanta, GA, December 9-12): The CHOICE Project, a partnership between Centers for Disease Control and Prevention [CDC] and Hemophilia Federation of America [HFA], was a survey of male and female persons with bleeding disorders (PwBD) who received care at federally-funded HTCs and those who do not receive care at HTCs (non-HTC). The ExPAND Project was developed to analyze a portion of the CHOICE data set related to males and females with a single diagnosis of hemophilia A or hemophilia B (PwH) treated either at an HTC or non-HTC. The purpose of this analysis of CHOICE/ExPAND was to analyze treatment, healthcare utilization and perceptions among female PwH (FwH) in the CHOICE data set to better understand gaps in female persons with hemophilia (FwH) healthcare and how those gaps can be addressed.
Of the 576 persons with hemophilia in the CHOICE dataset, 113 (20%) were females with hemophilia (FwH). Eighty-six percent (86%) of FwH reported a positive family history of hemophilia. When FwH were asked about bleeding episodes, 81% of FwH reported a bleeding episode; when asked specifically about the prior 12 months, fifty-nine percent (59%) reported having a joint bleed and forty-six percent (46%) reported a bleed in another location. While sixty-three percent (63%) of FwH received care for their hemophilia at least once a year only twenty-three percent (23%) of FwH received care only before a medical procedure. Most FwH received care at an HTC (40%) as opposed to care at a doctor’s office (29%) or emergency room (10%).Over the past 12 months 14% of FwH were admitted to a hospital due to their hemophilia and 28% visited an Emergency room. FwH in their reproductive years (18-34) had the lowest satisfaction score (1.8 out of 5). Overall FwH satisfaction with their hemophilia care was rated 2.9 on a 5 point scale.
There is additional need to understand the disease/treatment paradigm for this group of FwH who report a bleeding phenotype and have utilization of healthcare resources that includes emergency care for bleeding and around procedures.