Exploring Gaps in Fibroid Management: Insights From the FACT (Fibroid Access, Care, and Treatment) Pilot Survey [ID 1311]

INTRODUCTION: There are widespread disparities in access to and timeliness of fibroid care, but few studies document these outcomes from the patient’s perspective. This pilot study assesses patient-reported experiences of uterine fibroid care across the care continuum to inform a larger, multicenter survey. METHODS: A 33-item survey tool was developed with input from clinical experts and existing research. The survey was distributed over a 1-month period to new and established fibroid patients at the NYU Center for Fibroid Care. Fifty-five patients completed the pilot survey. Descriptive statistics were used to describe the data. Internal consistency of survey items was assessed. RESULTS: Eighty-four percent of participants were between ages 30 and 49; 42% had a family history of fibroids; 29% were Black, and 31% Hispanic; 38.8% saw more than three doctors prior to getting treatment. 71% felt the burden of their symptoms ranked as at least a 3 on a scale of 1–5. 52% of people felt their diagnosis at least somewhat affected physical activity. 66% prioritized keeping their uterus, and 56% finding a treatment that allowed for future pregnancy. 69% reported never discussing reproductive goals with a health care provider. 51% felt stress affected symptoms, yet only 4.8% discussed stress management with a provider. CONCLUSIONS/IMPLICATIONS: This pilot study supports the internal reliability of the survey and the feasibility of distribution. It revealed several critical themes: barriers to timely diagnosis and care coordination, symptom effect on daily life, and the gap between patients’ reproductive priorities and clinical counseling. These insights will be validated in a multicenter survey.