The impact of uterine leiomyomas: a national survey of affected women.

Uterine leiomyomas (fibroids) are benign tumors of the uterus that affect approximately 80% of women. 1 , 2 Most leiomyomas are asymptomatic, and most women do not undergo treatment. However, 25% of those affected have symptoms that impact activities of daily living or are severe enough to require treatment. Leiomyoma symptoms include heavy or prolonged menstrual bleeding, menstrual pain or cramping, passing blood clots, bloating, bowel or bladder dysfunction, and fatigue. 2 Uterine leiomyomas are the leading cause of hysterectomy (also the most common treatment for this condition). 3 , 4 Uterine leiomyomas have a three-fold increased relative risk and prevalence among African-American women. 5 Few studies have attempted to gauge symptomatology of women with leiomyomas, assess the way that women obtain information about the disease, or reveal how women use this information to make treatment choices. A recently conducted international survey confined its assessment to only bleeding and pain symptomology. 6 In addition to the physical symptoms, validated quality of life measures indicate that uterine leiomyomas impact women emotionally, including increased fears about their health along with additional considerations with regard to relationships, sexual function, body image, loss of control, and hopelessness. 7 Further, the economic impact of this disease is probably underestimated given the limited amount of information on its impact on women’s work. The purpose of this study is to provide a comprehensive assessment of the burden and impact of uterine leiomyomas in a diverse group of women. Because of the potentially higher impact of uterine leiomyomas on women of childbearing age, we attempted to quantitate the frequency and magnitude of morbidity in women under the age of 40 compared to older age groups: 40–49 and 50–59.

Of the 140,231 women invited to participate in the online survey, 968 (3%) met entry criteria, had symptomatic uterine fibroids, and were able to complete the survey. Respondents reported having had uterine leiomyomas for a mean of 8.7 years (median, 6 years) since diagnosis. Many (42%) had seen ≥2 health care providers (average, 1.7) before diagnosis. The mean time to seek treatment was 3.6 years (median, 2 years) (Table). One fourth (25%) had sought treatment within the first year of experiencing symptoms and 32% had waited >5 years. Treatment options had been discussed with providers by 87%. Most of the reported menstrual and nonmenstrual symptoms did not differ statistically among age groups. The prevalence ratios were lower among women aged 40–49 years than 29–39 years. Women under 40 were more concerned than their older counterparts about soiling clothes or bedding, the negative impact on their femininity or sexuality, and feeling sad, discouraged, or hopeless. Among women under 40, 31% said uterine leiomyomas made them feel “not in control of life” vs 20% and 11% of those aged 40–49 and 50–59, respectively ( P =.008). Uterus-sparing treatment options were important to women whether or not they were considering pregnancy. A small majority (51%) of survey respondents, especially those under 40, desired a treatment option that allowed the uterus to be retained. Most participants (79%) and 84% of those under 40 considered it important to have a leiomyoma treatment option that did not involve invasive surgery.

The relative risk for and prevalence of uterine leiomyoma, the leading cause of hysterectomy, are 3-fold greater among African-American women. The purpose of this study was to provide a comprehensive assessment of the burden and impact of uterine leiomyomas in a diverse group of women. Because of the potentially higher impact on women of childbearing age, we assessed the frequency and magnitude of morbidity in women under age 40 vs 40–49 and 50–59 years.

To our knowledge, this is the first large-scale survey of US women with symptomatic uterine leiomyomas to describe their perceptions of the impact on quality of life and concerns and preferences for treatment. Our findings are particularly relevant when viewed within the framework of the burden of this condition. Uterine leiomyomas affect millions of women worldwide; the cumulative US incidence is 70–80% by age 50. Including related obstetrical outcomes increases the total US cost from $5.9 billion to $34.4 billion annually. Our findings provide early information on the distribution of symptoms across age categories for women with uterine fibroids. After adjustment for baseline characteristics, most symptoms were similar across age groups. These findings emphasize the effect of leiomyomas on physical functioning across the lifespan and suggest the need for further investigation of ways in which perception of symptoms affects treatment-seeking behavior. Bladder symptoms, menstrual pain/cramps, and painful intercourse were less often reported in women in the intermediate age range (40–49) than the youngest (29–39). Differences in symptoms may be due in part to variations in hormonal levels, perceptions of pain and discomfort, or initial fibroid size and growth. The majority of women (66%) were concerned about missed workdays. Prior data on loss of work productivity in women with leiomyomas have been limited; no prior studies have documented the levels of perceived work impairment for women that are reported in this survey. Further research that incorporates women’s perception of work productivity could inform the development of patient-centered outcomes for planning and implementing clinical trials that compare treatment options. Fatigue played a substantial role in women’s perceptions of their health-related quality of life. Further studies to develop patient-centered outcome measures for symptoms of fatigue and work productivity are necessary to compare the effectiveness of medical or surgical treatment options for leiomyomas. Most women preferred noninvasive options for treatment regardless of the desire for childbearing. Our findings suggest that women across age categories are seeking information on alternatives to hysterectomy for a variety of reasons. Women verbalized the need for information on treatment options that are noninvasive and preserve fertility. Many women expressed a clear desire to keep their uterus aside from future childbearing. The primary implication of our study is that the effect of uterine fibroids on quality of life deserves further attention. Clinically, our findings can inform the conduct of qualitative research and provide an opportunity to systematically analyze women’s views and preferences for care. Such formative work can be used to develop clinical decision-making tools and to promote shared decision making about treatment between women and their providers. Trials should be large enough to provide direct evidence on the effects of nonsurgical and surgical treatments on patient-centered outcomes, such as quality of life and physical functioning, and to permit analyses specific to women of childbearing age. Finally, there is a critical need for studies of the direct and indirect (work productivity, loss of work time) costs of leiomyomas to better inform clinicians and third-party payers.

We conducted a cross-sectional survey of US women aged 29–59 from Dec. 1, 2011, through Jan. 16, 2012. Our target sample was 1000 participants. We sought to achieve national representative within the final survey sample by applying a weighting algorithm based on age, education, region, and income using information from the March 2010 Current Population Survey Database.