Al‐Hendy, Ayman

Background: Most women will experience uterine fibroids by the age of 50, yet few data exist describing the overall patient experience with fibroids. The objective of this population-based survey was to characterize symptom burden, patient awareness, and treatment decision-making for fibroids, including a comparison among women of varying backgrounds. Materials and Methods: Women (≥18 years) were recruited via email from GfK KnowledgePanel ® , a representative panel of US households, or identified with opt-in consumer panels. The Uterine Fibroid Symptom and Health-Related Quality of Life (UFS-QOL) questionnaire and Aberdeen Menorrhagia Severity Scale (AMSS) were included. Results: Eligible women were grouped into three cohorts: “at-risk” (symptoms suggestive of fibroids without clinical diagnosis, n = 300), “diagnosed” ( n = 871), and fibroid-related “hysterectomy” ( n = 272). Cohort and intracohort race/ethnicity and income analyses revealed differences in symptom burden, awareness/perception, and treatment history. Based on UFS-QOL scores, at-risk women reported significantly greater symptom severity and decreased health-related QOL versus diagnosed women; Hispanic women reported greater symptom severity versus white and black women. At-risk women also reported heavy menstrual bleeding and significant impact on work productivity. Among diagnosed women, 71% used pharmacologic therapy for symptom relief, and 30% underwent surgical or procedural treatment. Initial discussions with healthcare providers significantly impacted treatment outcomes; the hysterectomy cohort was most likely to first discuss hysterectomy. Conclusions: Women with fibroids or symptoms suggestive of fibroids experience significant distress that reduces QOL, particularly racial minorities and women in lower income brackets. Survey results suggest that many women are likely undiagnosed, underscoring the need for improved awareness and education.

AbstractUterine fibroids affect a wide cross-section of the population, with prevalence, symptom severity, and overall disease burden generally higher among black women, likely due to both genetic and environmental factors. Potential symptoms of uterine fibroids include painful and excessive uterine bleeding, interference with everyday life and self-image, and impaired fertility. Because of the high estimated prevalence and costs associated with treatments, the direct and indirect costs of uterine fibroids are substantial for both the health care system and the individual patient. Special patient populations—such as black women, women seeking to retain fertility, and women with asymptomatic fibroids—have particular treatment needs that require a variety of diagnostic methods and treatment options. Despite the widespread occurrence of uterine fibroids and newer treatment options, little high-quality data are available to formulate evidence-based guidelines that address these unmet patient needs. Specific areas in need of attention include improving diagnostic techniques, increasing patient access to early treatment, and identifying best practices for this diverse patient population.