Patient-centered management of heavy menstrual bleeding while on anticoagulation: A survey study.

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 (QOL). While there are several management options for HMB in patients with VTE, we lack information on how patients approach HMB treatment decisions.

Objectives: We examined patients' experience with, perceptions of, and preferences for treatment of HMB while on anticoagulation.

Methods: Clinicians and patient advocates developed a web-based survey that was distributed via patient advocacy organizations and social media between May and June 2024, targeting participants 18 years or older who menstruate with a history of VTE and self-reported HMB.

Results: A total of 387 participants completed the survey. All participants (100%) reported a history of HMB, and half (50%) experienced HMB while on anticoagulation for greater than twelve months. The majority (86%) reported a negative effect on their QOL. Only 43% of patients reported receiving treatment for HMB, with 10% reporting temporarily holding anticoagulation due to HMB. Approximately a fifth of respondents associated low-risk treatment modalities with thrombosis, including progesterone-only oral contraceptives (21%), implants (18%), and intrauterine devices (progesterone 18%, copper 17%). The majority (83%) of patients identified thrombotic risk as the most important factor when considering treatment options.

Conclusions: HMB is under-reported and undertreated in patients on anticoagulation. Patients have important misconceptions about treatment options; prioritized recurrent thrombosis risk when weighing treatment options; and preferred a multidisciplinary, multimodal approach. These findings should inform interventions to improve patient education and decision support for HMB on anticoagulants.