Patient-Centered Management of Heavy Menstrual Bleeding on Anticoagulants: An International Survey

Background Nearly three-quarters of women experience heavy menstrual bleeding (HMB) during anticoagulation treatment for venous thromboembolism (VTE). HMB can lead to medical interventions, impact school or work and diminish quality of life. We sought to examine patients' experience with, perceptions of, and preferences for treatment of HMB on anticoagulants to inform strategies that can improve outcomes. Methods A multidisciplinary team of clinicians and patient advocates developed a 34-question web-based survey. After pilot testing, the survey was openly distributed in May and June 2024 targeting participants 18 years or older with a history of VTE and self-reported HMB. Questions examined patients' experiences with treatment of HMB; perceptions of management options including side effects; and goals and preferences for treatment. Results Among 387 respondents, the majority were white (87%) and under age 50 years (72%). Most were from the US (77%), with the remainder from Europe, Australia/New Zealand, Asia, and Africa. Because the survey was openly distributed, a response rate could not be calculated. The majority were taking direct oral anticoagulants for VTE (51% apixaban, 35% rivaroxaban). A minority had discussed HMB as a potential side effect of anticoagulants with a clinician before (18%) or after (36%) starting treatment. After starting anticoagulants, half (50%) had experienced HMB for one or more years. Most (86%) reported that HMB had a negative effect on quality of life. Forty-three percent reported receiving any type of treatment for HMB. The most common modalities patients reported using were intrauterine device with progesterone (35%), birth control pill without estrogen (30%), procedures (e.g., hysterectomy) (29%), or change in anticoagulant type or dose (21%). Ten percent reported temporarily holding anticoagulants during HMB, nearly equal to the proportion using anti-fibrinolytics (12%). Respondents associated increased risk of thrombosis with estrogen-containing oral contraceptives (43%), estrogen-containing patches or rings (21%) and progesterone injections (23%). A significant minority also erroneously perceived increased thrombotic risk with low-risk modalities, including progesterone-only oral contraceptives (21%), implants (18%), intrauterine devices (progesterone 18%, copper 17%) and anti-fibrinolytics (15%). The most important factors for patients when choosing among treatments were risk of recurrent VTE (83%) and likelihood of decreasing HMB (55%) (participants could check more than one factor). Most preferred to take a daily pill (49%), a pill only during menses (43%) or to modify their anticoagulation (36%). Most (69%) wanted lighter but still present menstruation, some (41%) wanted absent menstruation, and an equal proportion (40%) wanted to decrease menstrual pain. Patients thought it was important to discuss treatment with both their obstetrician/gynecologist (77%) and hematologist (60%). To improve treatment knowledge and decision-making, the majority (61%) preferred written explanations over pictorials, interactive exercises and videos. Conclusions In this international survey of patients anticoagulated for VTE, we identified opportunities to improve patient-centered management of HMB, for which less than half of patients received treatment. Patients desired accurate information about thrombotic risk and other side effects so they could compare risks and benefits of treatment options. When making decisions, they prioritized risk of recurrent thrombosis, reduction in blood loss, and resolution of dysmenorrhea and preferred a multidisciplinary, multimodal approach. These findings should inform interventions to improve patient education and decision support for HMB on anticoagulants.