Burden, Prevalence, and Treatment of Uterine Fibroids: A Survey of U.S. Women

Abstract

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.

Keywords: burden; health disparities; quality of life; race/ethnicity; uterine fibroids; work.

FIG. 1.

Overview of Survey and Questions. ^aScreening questions also included consent to participate and determined qualification to participate in the remainder of the study. ^bParticipants who did not meet eligibility criteria did not see questions included in Part II of the survey. ^cBased on responses to the UFS-QOL and select questions from the AMSS portion of the Screener (Part I), severe or moderate uterine fibroids were defined as at least a moderate or higher score on both transformed UFS-QOL measures (Symptom Severity ≥36.5 and HRQOL Total Score ≤72.5) and the AMSS (≥40.5) or a severe score on at least one of the following metrics: UFS-QOL Symptom Severity ≥56.5, UFS-QOL HRQOL Total Score ≤50.5, or AMSS ≥72.5. AMSS, Aberdeen Menorrhagia Severity Scale; HCP, healthcare provider; UFS-QOL, Uterine Fibroid Symptom and Health-Related Quality of Life.

FIG. 2.

Respondent Disposition. ^aCompleted the Screener portion asked of all women (UFS-QOL and AMSS not asked of women with hysterectomy). ^bGeneral population represents women who completed the entire Screener, had not undergone a hysterectomy, and were premenopausal. ^cWomen who experienced symptoms suggestive of uterine fibroids without a clinical diagnosis. ^dCompleted the Main Questionnaire, were eligible for inclusion, and were selected for analysis based on predefined population quotas included to ensure a sample representative of the US population.

FIG. 3.

UFS-QOL Symptom Severity Score (A), HRQOL Total Score (B), and HRQOL Subscale Scores (C). Letters denote statistical difference at 90% confidence between cohorts, where G indicates a significant difference versus the general population and D indicates a significant difference versus diagnosed cohort. The n values reflect the unweighted base; mean values are based on the weighted base. General population represents women who completed the entire Screener, had not undergone a hysterectomy, and were premenopausal (Fig. 2). HRQOL, health-related quality of life; UFS-QOL, Uterine Fibroid Symptom and Health-related Quality of Life.

FIG. 4.

Action at Onset of Symptoms. The letter D denotes statistical difference at 90% confidence between the hysterectomy and diagnosed cohorts. Significance was not tested against the at-risk cohort since questions varied slightly. For the diagnosed and hysterectomy cohorts, phrasing was “what were the first things you did [when] uterine fibroid symptoms first appeared/first diagnosed with uterine fibroids,” whereas the at-risk cohort was asked about when “symptoms first appeared.” The n values reflect the unweighted base; percentages are based on the weighted base.

FIG. 5.

Treatment Usage Among Women in the Diagnosed Cohort (n = 871). The n value reflects the unweighted base; percentages are based on the weighted base. GnRH, gonadotropin-releasing hormone; NSAID, nonsteroidal anti-inflammatory drug.