PB0843 - The alarming persistence of heavy menstrual bleeding in persons with inherited bleeding disorders managed in Hemophilia Treatment Centers.

Background: People with the potential to menstruate are increasingly cared for at Hemophilia Treatment Centers (HTCs) due to improved awareness of bleeding symptoms specific to this population. As the majority of bleeding disorder datasets have been focused on males with hemophilia, symptoms such as heavy menstrual bleeding (HMB) have been under-collected, with only 15.8% of women and girls 15 years and older enrolled in the ATHNDataset reporting abnormal reproductive tract bleeding.

Aims: Apply validated menstrual-specific data collection tools to a cohort of persons with the potential to menstruate seen at HTCs.

Methods: This study was supported by the ATHN/HTRS DREAM award. This was a multi-institutional cross-sectional study. Following informed consent/assent, post-menarchal persons with inherited bleeding disorders receiving care at participating HTCs enrolled in the ATHNdataset completed the ISTH self-BAT, Menstrual Bleeding Questionnaire, PROMIS-25 or -29, and EQ-5D-5L. Data was abstracted from the chart to include in a reproductive tract bleeding focused form.

Results: Of the 250 total participants enrolled, 223 were < 50 years old and/or had not experienced menopause. Von Willebrand Disease was the most common diagnosis (58.7%, n=131), 20.6% had a factor deficiency (n=46), 9% (n=20) had platelet disorders, 4.9% had Ehlers-Danlos Syndrome (n=11), and 6.7% had other disorders (n =15). HMB was highly prevalent across data collection tools (89% by Self-BAT, 80% by chart review, and 63% by MBQ). The majority of participants had received or were receiving treatment for HMB (90.6%, n=202), with hormonal treatments being the most common (82.1%, n=183). HMB was reported in almost 2/3 of the cohort in the preceding month prior to enrollment, suggesting persistent symptoms despite interventions.

Conclusion(s): Utilizing data collection tools with questions specific to reproductive tract bleeding is critical to understanding the prevalence of these symptoms, and in this study, identified that HMB is an alarmingly persistent symptom despite specialized care at HTCs.