Objective
We sought to characterize the impact of uterine leiomyomas (fibroids) in a racially diverse sample of women in the United States.
Study Design
A total of 968 women (573 white, 268 African American, 127 other races) aged 29-59 years with self-reported symptomatic uterine leiomyomas participated in a national survey. We assessed diagnosis, information seeking, attitudes about fertility, impact on work, and treatment preferences. Frequencies and percentages were summarized. The χ 2 test was used to compare age groups.
Results
Women waited an average of 3.6 years before seeking treatment for leiomyomas, and 41% saw ≥2 health care providers for diagnosis. Almost a third of employed respondents (28%) reported missing work due to leiomyoma symptoms, and 24% believed that their symptoms prevented them from reaching their career potential. Women expressed desire for treatments that do not involve invasive surgery (79%), preserve the uterus (51%), and preserve fertility (43% of women aged <40 years).
Conclusion
Uterine leiomyomas cause significant morbidity. When considering treatment, women are most concerned about surgical options, especially women aged <40 years who want to preserve fertility.
Uterine leiomyomas (fibroids) are benign tumors of the uterus that affect approximately 80% of women. 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. Uterine leiomyomas are the leading cause of hysterectomy (also the most common treatment for this condition). Uterine leiomyomas have a 3-fold increased relative risk and prevalence among African American women.
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 symptomatology. In addition to the physical symptoms, validated quality of life (QOL) 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. 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 aged <40 years compared to older age groups: 40-49 and 50-59 years.
Materials and Methods
We conducted a cross-sectional survey of US women aged 29-59 years from Dec. 1, 2011, through Jan. 16, 2012. Our target sample was 1000 participants. The sampling frame for the survey was Harris Poll Online (HPOL), which is an actively managed, continually monitored respondent panel owned by Harris Interactive (New York, NY). The Focused Ultrasound Foundation was not included or named in any part of the survey. No advertisements or internet links to the foundation were included in the survey. The goal of HPOL is to provide a representative sample of the general population while identifying and reaching underrepresented populations of interest. Harris Interactive uses a weighting algorithm with propensity score adjustment to minimize the nonrandom selection bias inherent in Internet-based surveys. In the present study, national representativeness of the final survey sample was sought to be achieved by a weighting algorithm based on age, education, region, and income information based on March 2010 Current Population Survey Database. HPOL respondents are recruited from co-registration offers on partners’ web sites, targeted emails sent by online partners to their audiences, graphical and text banner placement on partners’ web sites (including social media, news, search, and community portals), trade show presentations, targeted postal mail invitations, and telephone recruitment of targeted populations. Each recruitment source is carefully vetted through a rigorous interviewing and testing process and then monitored for response quality on an ongoing basis. HPOL respondent information is actively screened and updated along numerous demographic and psychographic variables to allow for precision in the online sample. The email’s subject line was “We need your opinion, please participate today!” The text said “Hello, The latest Harris Poll Online survey is now open and we want your opinion! In order to receive the reward mentioned, you will need to qualify and complete the survey.” Panel participants receive points and chances in a sweepstakes for cash prizes for all survey participation. Neither the authors nor the Focused Ultrasound Foundation are involved in the HPOL reward program. Additional details about Harris’ online panel are available online ( http://www.harrisinteractive.com/MethodsTools/DataCollection/HarrisPollOnlinePanel.aspx and http://www.harrisinteractive.com/vault/HI_SP_Sheet_SamplingSupportandDesign.pdf ). The institutional review board at Mayo Clinic judged the study to be exempt.
Respondents in the targeted sample pool received an email invitation describing the study in general terms ( Appendix , Supplementary Table 1 ). The email directed those interested to a survey web site. The survey was conducted online using secure servers at Harris Interactive. Women were screened and considered eligible to participate if they spoke English, had been diagnosed with symptomatic uterine leiomyomas, had not had a hysterectomy, and were not pregnant.
To identify women with symptomatic uterine fibroids, we first asked participants if they had experienced any of the following symptoms in the past 2 years and to select all that apply: abdominal bloating and pressure/protruding abdomen/looking pregnant; passing blood clots during your menstrual period; heavy or prolonged menstrual bleeding (ie, menstrual flow that soaks through sanitary pads or tampons every hour or consistently lasts >7 days); abdominal pain/cramping/tightness; anemia; backache or leg pains; constipation; bladder symptoms (eg, difficulty urinating, frequent urge to urinate); fatigue; menstrual pain/cramps; painful intercourse or lack of interest in sex. If a participant checked at least 1 of the symptoms listed above, the next question stated, “You mentioned that you experienced [insert response] in the past 2 years. Have you ever been diagnosed by a health care professional with any of the following? Please select all that apply: endometriosis; asymptomatic uterine fibroids (ie, fibroids that are not causing you symptoms or discomfort of any kind); symptomatic uterine fibroids (ie, fibroids that are causing you symptoms or discomfort of any kind); none of the above.”
The initial group of respondents included 370 women aged >50 years (38% of the total 968 eligible respondents). Therefore, the initial age range of 21–50 years was adjusted to 29–59 years when no women aged <29 years successfully screened into the study. Although the older women who screened in are nearing menopause (and probable relief from symptoms of leiomyoma), they provided a valuable source for comparison of QOL issues with women aged <40 years.
Survey instrument
The survey consisted of 12 screening questions, 8 demographic questions, and 24 questions concerning diagnosis and symptoms, coping with symptoms, information seeking, fertility, and concerns about treatment. The average time to complete the survey was 20 minutes.
Most survey questions were based on a 4- or 5-point Likert scale. For ease of presentation, responses were combined into a smaller number of categories. For example, symptom results reported as severe are a combination of the “severe” and “very severe” Likert points. Those reported as concerns include points marked “all of the time” and “most of the time”; those reported as important include the “important” and “very important” points grouped together, and “not applicable” was a choice when a statement did not apply to that respondent’s experience or when the respondent neither agreed nor disagreed with a statement.
We also elicited responses on potential employment- and treatment-related concerns to which respondents could choose 1 of the following options: concerned, very concerned, somewhat concerned, unconcerned, very unconcerned, somewhat unconcerned, and not sure. For ease of interpretation, the first 3 of the choices were combined to form a “concerned” category while the next 3 categories were combined to form a “not concerned” category.
With formal permission from the Society for Interventional Radiology Foundation (Fairfax, VA), we used QOL questions from the Uterine Fibroid Symptom-QOL questionnaire, which was designed and validated as a reliable tool to measure health-related QOL for women with leiomyomas.
Statistical analysis
Statistical analyses comprised both bivariate and multivariate analyses. Bivariate analyses were performed using χ 2 test of goodness of fit for categorical covariates, and t test for continuous covariates.
Estimated prevalence ratios (PRs) were adjusted for potential confounding due to differences in the baseline characteristics of the sampled subjects. Although log-binomial models are suggested for estimating PRs, they are often difficult to fit due to well-known problems of convergence of the resulting likelihood function ; therefore, we used the modified Poisson regression of Zou to estimate PRs with the youngest group of patients (29-39 years) as the referent group.
A P value of < .05 was considered statistically significant. Analyses were conducted using statistical software (Stata, version 11.2; StataCorp LP, College Station, TX), which provides capabilities for analyzing survey data.
Results
Response rate and participant characteristics
Of the 140,231 people invited to participate in the online survey, 73,103 never clicked on the link, 34,902 suspended the survey, and 31,258 did not qualify (23,850 did not have symptomatic uterine fibroids; 5010 were excluded because the target number of respondents in their specific racial/ethnic category had been met; 1927 had undergone hysterectomy; 187 were out of the desired age range; 161 were not female; 106 were pregnant, breast-feeding, or did not meet menstrual cycle criteria; and 17 were not US women)–leaving the 968 (3%) who met each of the entry criteria, had symptomatic uterine fibroids and were able to complete the survey. Table 1 exhibits the characteristics of the survey respondents, subgrouped by 3 age categories (29-39, 40-49, and 50-59 years). Of participants, 64% were white, 28% were of African descent (black/African/African American/Afro-Caribbean), and 8% were from other racial backgrounds or of mixed racial background. Most women were parous (69%). The percent of respondents within each age category were 25%, 46%, and 29%, respectively. The majority of respondents (61%) were married or in a civil union. Educational backgrounds included 72% who had completed some form of higher education. Over half (66%) of the respondents were employed full time (including self-employment). Of those employed who responded, 39% earned >$75,000 annually, and 23% reported an annual income of <$35,000 ( Table 1 ).
| Covariates | Total | Age groups, y | P value | ||
|---|---|---|---|---|---|
| 29-39 | 40-49 | 50-59 | |||
| Race, n (%) | .003 | ||||
| White | 621 (64) | 133 (14) | 282 (29) | 206 (21) | |
| African American | 272 (28) | 82 (8) | 127 (13) | 63 (7) | |
| Other | 75 (8) | 34 (3) | 35 (4) | 6 (1) | |
| Parity, n (%) | .236 | ||||
| ≥1 children | 673 (69) | 159 | 321 (33) | 193 | |
| No children | 295 (31) | 90 | 123 | 83 | |
| Marital status, n (%) | .017 | ||||
| Single | 239 (25) | 75 (8) | 115 (12) | 48 (5) | |
| Married/civil union | 591 (61) | 147 (15) | 277 (29) | 167 (17) | |
| Divorced/separated/widowed | 138 (14) | 27 (3) | 52 (5) | 59 (6) | |
| Education, n (%) | .327 | ||||
| ≤High school | 272 (28) | 74 (8) | 134 (14) | 64 (7) | |
| Some college | 339 (35) | 73 (8) | 166 (17) | 100 (10) | |
| College graduate | 231 (24) | 69 (7) | 95 (10) | 67 (7) | |
| Some graduate | 126 (13) | 32 (3) | 49 (5) | 45 (5) | |
| Employment status, n (%) | .110 | ||||
| Employed | 638 (66) | 183 (19) | 282 (29) | 173 (18) | |
| Unemployed | 292 (30) | 53 (5) | 149 (15) | 89 (9) | |
| Student/retired | 38 (4) | 13 (1) | 13 (1) | 13 (1) | |
| Income categories, n (%) | .104 | ||||
| <$35,000 | 221 (23) | 57 (6) | 103 (11) | 61 (6) | |
| $35,000-75,000 | 338 (35) | 99 (10) | 167 (17) | 72 (7) | |
| >$75,0000 | 374 (39) | 89 (9) | 159 (16) | 127 (13) | |
| Decline to answer | 35 (4) | 5 (1) | 15 (2) | 15 (2) | |
| Overall health status, n (%) | .454 | ||||
| Excellent/very good | 301 (31) | 90 (9) | 125 (13) | 86 (9) | |
| Good | 426 (44) | 109 (11) | 196 (20) | 121 (12) | |
| Fair/poor | 241 (25) | 49 (5) | 123 (13) | 69 (7) | |
| Time to seeking care/treatment, n (%) | .290 | ||||
| <1 y | 238 (25) | 66 (7) | 111 (11) | 61 (6) | |
| 1-2 y | 197 (20) | 57 (6) | 87 (9) | 52 (5) | |
| 2-4 y | 222 (23) | 36 (4) | 111 (11) | 75 (8) | |
| ≥5 y | 311 (32) | 89 (9) | 134 (14) | 87 (9) | |
| No. of providers seen, n (%) | .002 | ||||
| 1 | 567 (59) | 128 (13) | 280 (29) | 159 (16) | |
| 2 | 276 (29) | 64 (7) | 115 (12) | 96 (10) | |
| ≥3 | 125 (13) | 57 (6) | 48 (5) | 20 (2) | |
| Geographic location, n (%) | .601 | ||||
| Northeast | 243 (25) | 54 (6) | 106 (11) | 82 (9) | |
| Midwest | 186 (19) | 54 (6) | 78 (8) | 54 (6) | |
| South | 334 (34) | 81 (8) | 167 (17) | 86 (9) | |
| West | 206 | 59 (6) | 94 (10) | 53 (6) | |
| Time to seeking care, y, mean (SE) | 3.64 (0.19) | 3.46 (0.37) | 3.68 (0.33) | 3.73 (0.27) | .560 b |
| Age at diagnosis, y, mean (SE) | 36 (0.39) | 29 (0.61) | 38 (0.46) | 40 (0.64) | < .001 b |
| Duration of uterine fibroid diagnosis, y, mean (SE) | 8.68 (0.33) | 5.92 (0.57) | 7.25 (0.44) | 13.48 (0.63) | < .001 b |
| No. of providers seen, mean (SE) | 1.7 (0.05) | 1.9 (0.14) | 1.6 (0.07) | 1.6 (0.07) | .024 b |
| ≥1 treatment options discussed with provider, c n (%) | 224 (90) | 388 (87) | 232 (85) | 845 (87%) | .471 |
a Sample is representative of US population–larger proportion of African American women is due to oversampling because of their increased prevalence
b t test was implemented assuming age group as continuous covariate, however, when age group is considered categorical, statistical significance of associated P values for age groups 40-49 and 50-59 y in reference to age group 29-39 y do not change
c Treatment options included traditional or minimally invasive hysterectomy, traditional or minimally invasive myomectomy, focused ultrasound treatment, contraceptives, other medications (Lupron; Abbott Industries, Chicago, IL, and Lysteda; Ferring Pharmaceuticals, Parsippany, NJ), uterine artery embolization or uterine fibroid embolization, or endometrial ablation, whenever mean and SE are reported, it is specifically noted in corresponding variable label.
The respondents in this survey reported having had uterine leiomyomas for a mean of 8.7 years (median 6 years) since diagnosis. Many women (42%) saw ≥2 health care providers before being diagnosed; overall, women saw an average of 1.7 providers before diagnosis. The mean amount of time to seek treatment for all women in the survey was 3.6 years, while the median wait time for seeking treatment was 2 years ( Table 1 ). While 25% of women sought treatment within the first year of experiencing symptoms, 32% waited >5 years before seeking treatment for these symptoms. In all, 87% reported discussing ≥1 treatment options with their providers ( Table 1 ).
Severity of symptoms
We collected data on severity of symptoms experienced in the past 3 months ( Table 2 ). Half of the women (50%) reported that they did not consider their menstrual cycle to be normal, with 56% reporting that they had spotting or staining before or after their cycle. Nearly a third of women (29%) characterized their cycles as heavy or with prolonged bleeding and had severe menstrual pain or severe cramps. Note that when potential confounding due to differences in patient characteristics was accounted for, most of the menstrual and nonmenstrual symptoms reported in Table 2 were not statistically different among the 3 age groups except for bladder symptoms, menstrual pain/cramps, and painful intercourse. In general, women in the intermediate age group (40-49 years) had lower PRs of those symptoms than those in the younger (29-39 years) age group.
| Variable | Overall n = 968 (%) | (1) 29-39 y n = 249 (%) | (2) 40-49 y n = 444 (%) | (3) 50-59 y n = 275 (%) | P value | PR (2) vs (1) | P value | PR (3) vs (1) | P value |
|---|---|---|---|---|---|---|---|---|---|
| Menstrual cycle normal? | .304 | ||||||||
| Yes | 408 (42) | 110 (44) | 193 (44) | 105 (38) | 1.08 | .742 | 1.13 | .719 | |
| No | 483 (50) | 127 (51) | 218 (49) | 139 (50) | ref | ref | |||
| Missing | 77 (8) | 12 (5) | 33 (7) | 32 (12) | |||||
| Whether had spotting or staining before or after menstrual cycle | < .001 | ||||||||
| Yes | 544 (56) | 176 (71) | 255 (57) | 112 (41) | 1.01 | .759 | 0.88 | .530 | |
| No | 425 (44) | 72 (29) | 189 (43) | 163 (59) | ref | ref | |||
| Did you try to manage your fibroid symptoms yourself before seeking medical treatment? | .960 | ||||||||
| Yes | 535 (55) | 135 (54) | 246 (55) | 154 (56) | 0.95 | .736 | 0.76 | .301 | |
| No | 433 (45) | 114 (46) | 198 (45) | 121 (44) | ref | ref | |||
| Heavy or prolonged menstrual bleeding | < .001 | ||||||||
| Severe/very severe | 277 (29) | 97 (39) | 128 (29) | 52 (19) | 1.05 | .646 | 1.17 | .353 | |
| Very mild/mild/moderate | 290 (30) | 96 (38) | 147 (33) | 48 (17) | 1.00 | .995 | 1.05 | .456 | |
| None in last 3 mo | 401 (41) | 56 (22) | 169 (38) | 176 (64) | ref | ref | |||
| Abdominal pain/cramping/tightness | < .001 | ||||||||
| Severe/very severe | 233 (24) | 82 (33) | 119 (27) | 32 (12) | 0.87 | .220 | 0.98 | .928 | |
| Very mild/mild/moderate | 484 (50) | 132 (53) | 240 (54) | 112 (40) | 0.94 | .131 | 0.97 | .626 | |
| None in last 3 mo | 251 (26) | 35 (14) | 85 (19) | 132 (48) | ref | ref | |||
| Anemia | .002 | ||||||||
| Severe/very severe | 105 (11) | 34 (14) | 56 (13) | 15 (5) | 0.98 | .700 | 1.05 | .586 | |
| Very mild/mild/moderate | 363 (38) | 110 (44) | 177 (40) | 76 (28) | 0.97 | .349 | 0.97 | .661 | |
| None in last 3 mo | 500 (52) | 104 (42) | 212 (48) | 184 (67) | ref | ref | |||
| Backache or leg pains | < .001 | ||||||||
| Severe/very severe | 206 (21) | 66 (26) | 88 (20) | 51 (19) | 0.84 | .097 | 0.80 | .204 | |
| Very mild/mild/moderate | 521 (54) | 126 (51) | 274 (62) | 120 (44) | 0.93 | .072 | 1.00 | .959 | |
| None in last 3 mo | 242 (25) | 57 (23) | 81 (18) | 104 (38) | ref | ref | |||
| Constipation | .004 | ||||||||
| Severe/very severe | 87 (9) | 36 (154) | 34 (8) | 16 (6) | 1.04 | .638 | 1.03 | .800 | |
| Very mild/mild/moderate | 534 (55) | 142 (57) | 261 (59) | 130 (47) | 0.99 | .828 | 1.02 | .731 | |
| None in last 3 mo | 348 (36) | 70 (28) | 148 (33) | 129 (47) | ref | ref | |||
| Bladder symptoms | .175 | ||||||||
| Severe/very severe | 88 (9) | 29 (12) | 39 (9) | 20 (7) | 0.99 | .834 | 1.02 | .843 | |
| Very mild/mild/moderate | 488 (50) | 123 (49) | 243 (55) | 122 (44) | 0.92 | .045 | 0.90 | .091 | |
| None in last 3 mo | 392 (40) | 97 (39) | 162 (37) | 133 (48) | Ref | ref | |||
| Fatigue | < .001 | ||||||||
| Severe/very severe | 252 (26) | 92 (37) | 113 | 47 | 1.04 | .793 | 1.20 | .417 | |
| Very mild/mild/moderate | 519 (54) | 119 (48) | 264 (59) | 136 (49) | 0.99 | .736 | 1.05 | .437 | |
| None in last 3 mo | 197 (20) | 37 (15) | 68 (15) | 92 (34) | ref | Ref | |||
| Menstrual pain/cramps | < .001 | ||||||||
| Severe/very severe | 281 (29) | 110 (44) | 133 (30) | 38 (14) | 0.72 | .006 | 0.78 | .174 | |
| Very mild/mild/moderate | 430 (44) | 108 (43) | 244 (55) | 78 (28) | 0.86 | < .001 | 0.91 | .152 | |
| None in last 3 mo | 257 (27) | 31 (12) | 67 (15) | 159 (58) | ref | ref | |||
| Painful intercourse | < .001 | ||||||||
| Severe/very severe | 70 (7) | 16 (7) | 36 (8) | 17 (6) | 0.90 | .026 | 0.85 | .027 | |
| Very mild/mild/moderate | 358 (37) | 124 (51) | 164 (37) | 67 (24) | 0.97 | .464 | 0.96 | .510 | |
| None in last 3 mo | 541 (56) | 105 (42) | 244 (55) | 191 (69) | ref | ref | |||
| Lack of interest in sex | .004 | ||||||||
| Severe/very severe | 167 (17) | 56 (22) | 74 (17) | 37 (13) | 1.08 | .389 | 1.15 | .328 | |
| Very mild/mild/moderate | 420 (43) | 121 (49) | 203 (46) | 95 (35) | 1.04 | .382 | 1.11 | .100 | |
| None in last 3 mo | 381 (39) | 72 (29) | 166 (37) | 143 (52) | ref | ref | |||
| Methods of self-management before seeking medical care (among those who self-managed, n = 535) | |||||||||
| Over-the-counter medications | .190 | ||||||||
| Yes | 307 (57) | 92 (68) | 134 (54) | 82 (53) | 0.97 | .908 | 1.11 | .782 | |
| No | 218 (41) | 43 (32) | 104 (43) | 70 (45) | ref | ref | |||
| Missing | 10 (2) | 0 (0) | 8 (3) | 3 (2) | |||||
| Herbs/supplements or other alternative or complementary therapies | .200 | ||||||||
| Yes | 137 (26) | 47 (34) | 58 (24) | 32 (21) | 1.10 | .823 | 1.15 | .853 | |
| No | 388 (73) | 89 (66) | 180 (73) | 120 (78) | ref | ref | |||
| Missing | 10 (2) | 0 (0) | 8 (3) | 3 (2) | |||||
| Exercise/diet/lifestyle modifications | .168 | ||||||||
| Yes | 267 (50) | 81 (60) | 109 (44) | 77 (50) | 0.95 | .850 | 1.20 | .648 | |
| No | 258 (48) | 54 (40) | 129 (53) | 75 (49) | ref | ref | |||
| Missing | 10 (2) | 0 (0) | 8 (3) | 3 (1) | |||||
Perceptions of leiomyomas and impact on QOL and employment
As shown in the Supplementary Table 2 ( Appendix ), women with leiomyomas had a number of concerns related to their uterine leiomyoma diagnosis. Most reported fears, including being afraid that their leiomyomas will grow (79%), that there is something inside of them that does not belong there (69%), that they would experience future health complications (63%), that they will need a hysterectomy (55%), that the leiomyomas would turn into cancer (54%), or that the leiomyomas would affect their sex life (52%). However, when adjusted for their baseline characteristics, the PRs in women in the 3 age groups did not differ by different concerns.
Women aged <40 (29-39) years were also more concerned than their older counterparts (40-49 and 50-59 years) about soiling clothes or bedding (44% vs 35% and 22%, respectively, P < .001), the negative impact on their femininity or sexuality (39% vs 17% and 11%, respectively, P = .01), and feeling sad, discouraged, or hopeless (36% vs 17% and 7%, respectively, P < .001). Furthermore, approximately a third of the women aged <40 years (31%) reported that their uterine leiomyomas made them feel “not in control of life,” as compared to 20% and 11% of the women aged 40-49 and 50-59 years, respectively ( P = .008) ( Table 3 ).
| Variable | Overall n = 968 (%) | (1) 29-39 y n = 249 (%) | (2) 40-49 y n = 444 (%) | (3) 50-59 y n = 275 (%) | P value | PR (2) vs (1) | P value | PR (3) vs (1) | P value |
|---|---|---|---|---|---|---|---|---|---|
| Caused you to feel tired or worn out a | < .001 | ||||||||
| All/most of time | 418 (43) | 136 (55) | 195 (44) | 87 (32) | 0.82 | .072 | 0.77 | .143 | |
| Little/some of time | 331 (34) | 72 (29) | 176 (40) | 83 (30) | 0.88 | .003 | 0.88 | .075 | |
| None of time | 94 (10) | 21 (9) | 36 (8) | 37 (13) | ref | ref | |||
| Not applicable | 126 (13) | 19 (8) | 38 (8) | 69 (25) | – | – | |||
| Made you feel sad, discouraged, or hopeless a | < .001 | ||||||||
| All/most of time | 185 (19) | 89 (36) | 78 (17) | 18 (7) | 0.97 | .749 | 0.99 | .940 | |
| Little/some of time | 377 (39) | 101 (40) | 189 (43) | 87 (32) | 1.03 | .697 | 1.10 | .463 | |
| None of time | 245 (25) | 29 (12) | 128 (29) | 87 (31) | ref | ref | |||
| Not applicable | 162 (17) | 30 (12) | 49 (11) | 83 (30) | – | – | |||
| Made you feel conscious about size and appearance of your stomach a | < .001 | ||||||||
| All/most of time | 354 (37) | 107 (43) | 177 (40) | 70 (26) | 0.94 | .575 | 0.97 | .865 | |
| Little/some of time | 304 (31) | 77 (31) | 150 (34) | 77 (28) | 0.96 | .653 | 1.01 | .929 | |
| None of time | 163 (17) | 42 (17) | 68 (15) | 53 (19) | ref | ref | |||
| Not applicable | 148 (15) | 24 (10) | 48 (11) | 76 (28) | – | – | |||
| Made you feel self-conscious about weight gain a | < .001 | ||||||||
| All/most of time | 358 (37) | 98 (39) | 192 (43) | 68 (25) | 0.87 | .214 | 0.89 | .560 | |
| Little/some of time | 298 (31) | 77 (31) | 139 (31) | 82 (30) | 0.81 | .028 | 0.82 | .195 | |
| None of time | 172 (18) | 50 (20) | 73 (16) | 49 (18) | ref | ref | |||
| Not applicable | 140 (15) | 24 (10) | 40 (9) | 76 (28) | – | – | |||
| Made you concerned about soiling clothes or bedding a | < .001 | ||||||||
| All/most of time | 325 (34) | 108 (44) | 156 (35) | 61 (22) | 0.85 | .210 | 0.76 | .211 | |
| Little/some of time | 297 (31) | 83 (33) | 145 (33) | 70 (25) | 0.90 | .266 | 0.94 | .686 | |
| None of time | 176 (18) | 30 (12) | 87 (20) | 59 (22) | ref | ref | |||
| Not applicable | 170 (18) | 28 (11) | 56 (13) | 86 (31) | – | – | |||
| Interfered with your physical activities a | .002 | ||||||||
| All/most of time | 303 (31) | 94 (38) | 142 (32) | 66 (24) | 0.72 | .002 | 0.61 | .005 | |
| Little/some of time | 361 (37) | 82 (33) | 192 (43) | 87 (32) | 0.87 | .111 | 0.92 | .528 | |
| None of time | 158 (16) | 45 (18) | 64 (14) | 49 (18) | ref | ref | |||
| Not applicable | 146 (15) | 28 (11) | 46 (10) | 72 (26) | – | – | |||
| Interfered with your daily and social activities a | .008 | ||||||||
| All/most of time | 213 (22) | 76 (31) | 96 (22) | 41 (15) | 0.80 | .015 | 0.66 | .009 | |
| Little/some of time | 381 (39) | 94 (38) | 188 (42) | 99 (36) | 1.00 | .989 | 1.07 | .576 | |
| None of time | 211 (22) | 53 (21) | 98 (22) | 60 (22) | ref | ref | |||
| Not applicable | 163 (17) | 25 (10) | 61 (14) | 77 (28) | – | – | |||
| Made you feel as if you are not in control of your life a | .008 | ||||||||
| All/most of time | 197 (20) | 78 (31) | 90 (20) | 30 (11) | 0.84 | .123 | 0.75 | .091 | |
| Little/some of time | 357 (37) | 100 (40) | 164 (37) | 92 (34) | 0.98 | .834 | 0.95 | .671 | |
| None of time | 238 (25) | 38 (15) | 131 (30) | 70 (25) | ref | ref | |||
| Not applicable | 176 (18) | 33 (13) | 59 (13) | 84 (30) | – | – | |||
| Relationships | |||||||||
| Affected your relationship with family/friends | < .001 | ||||||||
| All of time/most of time | 138 (14) | 54 (22) | 58 (13) | 26 (9) | 0.88 | .164 | 0.82 | .240 | |
| Little/some of time | 318 (33) | 87 (35) | 154 (35) | 78 (28) | 0.97 | .654 | 0.91 | .323 | |
| None of time | 332 (34) | 74 (30) | 167 (38) | 91 (33) | ref | ref | |||
| Not applicable | 180 (19) | 34 (14) | 65 (15) | 81 (30) | – | – | |||
| Affected your relationship with husband/significant other | < .001 | ||||||||
| All/most of time | 194 (20) | 82 (33) | 85 (19) | 27 (10) | 0.90 | .339 | 0.87 | .386 | |
| Little/some of time | 324 (33) | 78 (31) | 165 (37) | 81 (29) | 0.99 | .904 | 0.97 | .787 | |
| None of time | 225 (23) | 54 (22) | 102 (23) | 69 (25) | ref | ref | |||
| Not applicable | 226 (23) | 35 (14) | 92 (21) | 99 (36) | – | – | |||
| Affected your ability to take care of your home/children | .01 | ||||||||
| All/most of time | 131 (14) | 54 (22) | 52 (12) | 25 (9) | 0.84 | .082 | 0.73 | .058 | |
| Little/some of time | 313 (32) | 86 (34) | 154 (35) | 73 (27) | 0.98 | .745 | 0.94 | .552 | |
| None of time | 308 (32) | 65 (26) | 152 (34) | 90 (33) | ref | ref | |||
| Not applicable | 215 (22) | 44 (18) | 85 (19) | 87 (32) | – | – | |||
| Negatively affected your sense of femininity/sexuality | .01 | ||||||||
| All/most of time | 202 (21) | 97 (39) | 76 (17) | 29 (11) | 1.07 | .497 | 1.02 | .889 | |
| Little/some of time | 293 (30) | 67 (27) | 148 (33) | 77 (28) | 1.04 | .561 | 1.05 | .700 | |
| None of time | 299 (31) | 59 (24) | 157 (35) | 84 (30) | ref | ref | |||
| Not applicable | 174 (18) | 26 (10) | 63 (14) | 85 (31) | – | – |
a Questions taken with permission from Uterine Fibroid Symptom-Quality of Life instrument.
Some of these differences persisted even after accounting for potential confounding due to differences of baseline characteristics ( Table 3 ). Specifically, as seen from the adjusted PRs, younger women (29-39 years) were more likely to report they “feel tired or worn out a little/some of the time” or “feel self-conscious about weight gain a little/some of the time” or that uterine fibroids “interfered with physical activities all/most of the time” or “interfered with daily and social activities all/most of the time.”
Our survey also found significant age differences in the way that uterine leiomyomas affect the lifestyle of respondents. Although every age group was affected, the women aged <40 years were more likely than women aged 40-49 and 50-59 years to report that their uterine leiomyomas affected their relationship with their partner (33% vs 19% and 10%, P < .001), ability to take care of their home/children (22% vs 12% and 9%, P = .01), and relationships with family/friends (21% vs 13% and 9%, P < .001) ( Table 3 ). However, when adjusted for the baseline characteristics, these differences were no longer statistically significant.
Respondents perceived that uterine leiomyomas negatively impacted their career potential and workplace environment ( Appendix , Supplementary Table 3 ). We found significant differences in perceptions of the impact on career advancement for women aged <40 years compared with women aged 40-49 and 50-59 years. When asked about their work-related experiences in the 3 months prior to the study, 28% of employed respondents reported that their uterine leiomyomas caused them to miss days of work, with a disproportionate impact on the women aged <40 years compared to older respondents (37% among women ≤40 years vs 30% and 16% among women 40-49 and 50-59 years, respectively, P = .002); further, 26% were prevented from carrying out their normal work-related responsibilities (35% vs 27% and 13%, P < .001) and 24% were prevented from reaching their true career potential (32% vs 24% and 15%, P = .03). However, following multivariate adjustment, these differences were no longer statistically significant.
Women’s preferences for treatment
Uterine-sparing treatment options were important to women whether or not they were considering a pregnancy ( Table 4 ). The majority (51%) of survey respondents believed it was important to have a leiomyoma treatment option that allowed a woman to keep her uterus, and these percentages were significantly higher in women aged <40 years (65% vs 47% each in the older categories, P = .021). Three quarters of all participants (79%) and 84% of those aged <40 years indicated that it was important to have a leiomyoma treatment option that did not involve invasive surgery. One fifth (20%) of all of the women surveyed thought it was important to have treatment options that preserved the ability to achieve pregnancy, but a higher percentage (43%) of women aged <40 years said that it was important to have leiomyoma treatment procedures that protected the ability to have children. Of women aged <40 years, 65% reported that uterine preservation was important compared to 47% of women aged 40-49 and 50-59 years. However, note that when baseline characteristics of the sampled women were adjusted, these differences by age groups could not be sustained.
