PB0257 - Adequate Menstrual Suppression in Adolescents with Bleeding Disorders Often Requires Multiple Treatment Changes: Five-Year Experience of a Large Multidisciplinary Clinic

Background: Heavy menstrual bleeding (HMB) is often the presenting bleeding symptom for girls and women with inherited bleeding disorders (IBD). Multidisciplinary clinics use the expertise of hematologists and gynecologists to guide treatment, as this population can have refractory HMB.

Aims: Characterize the complexity of HMB management for adolescents with IBDs from a large comprehensive young women’s bleeding over the past five years.

Methods: For this retrospective cohort study, we reviewed the charts of all adolescents seen in the Young Women’s Bleeding Clinic at the Hemophilia of Georgia Center for Bleeding and Clotting Disorders at Children’s Healthcare of Atlanta. Data was extracted through manual chart review. HMB was defined as bleeding lasting 7 days, changing protection every 2 hours or more, or flooding.

Results: The clinic served 104 unique patients over 142 visits. Seventy-eight patients (75%) have an IBD and 71 (91%) patients with an IBD reported HMB. Of the 71 with HMB and an IBD, the median age at last visit was 16.5 years (IQR 15.1-17.5). The majority were Caucasian (60.6%), and 21.1% were of Hispanic ethnicity. Von Willebrand Disease was the most common IBD (83%), followed by platelet function defects and factor VII deficiency (7% each). Median age of menarche was 11 years (IQR 10-12) and 67.6% reported HMB since menarche. The median number of menstrual suppression treatments was 3 (range 1-8) and only 15 patients (21.1%) achieved acceptable menstrual suppression with their first treatment. The Sankey diagram (Figure 1), depicts treatment changes for adolescents seen in the clinic. The most common reason for switching therapy was uncontrolled or breakthrough bleeding (55%) followed by adverse effects (22.4%) and patient preference 8.5% (Figure 2).

Conclusion(s): Adolescents with bleeding disorders often require trials of multiple different modalities to achieve adequate menstrual suppression without undesired adverse effects. Prospective comparative effectiveness studies would help guide treatment decisions.