Researchers recently characterized several patterns and outcomes related to bleeding in women and girls with hemophilia in a report published in the journal Haemophilia.
“[Women and girls with hemophilia] present with symptoms related to reproductive health, as well as with bleeding events typically observed in [men] with [hemophilia],” the study investigators stated in their report.
The study was a retrospective, noninterventional review of records regarding women and girls with hemophilia from 3 hemophilia treatment centers in the US, with data obtained from April 2012 through mid-November 2018. Outcomes were evaluated for patients who had 2 or more hemophilia treatment centers visits for management of hemostasis, and who had required medical or surgical treatment related to hemostasis.
A total of 47 women and girls with hemophilia were evaluated. Of these patients, 37 had factor VIII deficiency, and 10 had factor IX deficiency. The median age at diagnosis was 22.6 years, and most patients (79%) had a diagnosis of mild hemophilia. Diagnoses were typically confirmed by family history and/or laboratory evidence.
Patients’ first-time visits to the hemophilia treatment centers were most commonly related to family history/genetic counseling. The second most common reason for initial hemophilia treatment center visits was to address spontaneous or traumatic bleeds. Of patients with these types of bleeds, easy bruising occurred in 59% of patients, epistaxis in 35% of patients, joint bleeds in 29% of patients, excessive dental bleeding in 24% of patients, and other bleeds in 24% of patients.
Nearly half (49%) of women and girls with hemophilia in this study experienced spontaneous, traumatic, or joint bleeds over the course of the study. These bleeding events were managed using factor concentrates, desmopressin, an antifibrinolytic, or other treatment. Initial treatment typically was successful, with bleeding stopped in 52.2% of cases or reduced in 39.1%.
Heavy menstrual bleeding, however, was not sufficiently controlled in the majority (57.1%) of the 14 patients who reported this complication. Additionally, of 25 patients who experienced pregnancies, excessive bleeding was reported in 44.0% during delivery or postpartum with at least 1 pregnancy.
The study investigators indicated a lack of specific guidelines in treating women and girls with hemophilia has led to varied approaches to management for this patient population. “Furthering clinical care for [women and girls with hemophilia] is needed to reduce the psychosocial, emotional and economic impacts of a bleeding disorder diagnosis,” the researchers concluded in their report.
Disclosure: Some authors have declared affiliations with or received grant support from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.
Chaudhury A, Sidonio Jr R, Jain N, et al. Women and girls with haemophilia and bleeding tendencies: outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review. Haemophilia. Published online December 24, 2020. doi:10.1111/hae.14232