Perceptions of Ethnoracial Factors in the Management and Treatment of Uterine Fibroids

Abstract

Background

Uterine fibroids are non-cancerous neoplasms of the uterus. Women of color, including non-Hispanic Black/African American women and Hispanic/Latinas, have a higher uterine fibroid prevalence, incidence, and disease burden compared to non-Hispanic White women. Therefore, understanding ethnoracial factors in the diagnosis and treatment of uterine fibroids in women of color is critical. This study provides insight on the ethnoracial factors and cultural barriers experienced by women of color in the management and treatment of uterine fibroids.

Methods

Women were recruited via The Fibroid Foundation, a nonprofit that provides uterine fibroid support and education. Women who were interested completed an online screening survey. Eligible participants were interviewed via phone. Transcribed audio recordings were qualitatively analyzed using the principles of grounded theory.

Results

Forty-seven women of reproductive age who were diagnosed with uterine fibroids and received U.S.-based care participated in a semi-structured interview exploring experiences with uterine fibroid diagnosis and management. Twenty-eight women self-identified as Black, Latina, or other ethnicity. Women of color reported fibroid symptoms that significantly disrupted their work and home life. Women of color also reported perceptions that their race/ethnicity impacted their uterine fibroid treatment, including negative interpersonal provider-patient interactions. These perceptions engendered feelings of skepticism towards the medical system based on historical injustices and/or their own negative experiences and led some to go without longitudinal care.

Conclusion

Cultural and familial factors have significant impact on uterine fibroid diagnosis and management. Greater attention to culturally sensitive care and potential bias reduction in the treatment of uterine fibroids should be a priority.

Introduction

Uterine fibroids, known as uterine leiomyomas or myomas, are non-cancerous neoplasms found in the uterus. Most women are asymptomatic, but up to 50% of women experience clinical symptoms. Symptoms include abnormal uterine bleeding, which can lead to iron-deficiency anemia. Bulk symptoms are related to the pressure of the uterine fibroids and may result in pelvic pain/pressure, bowel dysfunction, and abdominal protrusion. Reproductive dysfunction including miscarriage and infertility can also be symptoms [1]. Psychosocial symptoms include decreased quality of life, anxiety, and feelings of helplessness [2, 3]. Uterine fibroids is the leading cause of hysterectomy for benign indications in the United States [4], at an estimated cost of $34 billion annually.

Non-Hispanic Black/African American (Black) women have a higher uterine fibroid prevalence than non-Hispanic White (NHW) women (9.8%; 95% CI: 8.7–11% vs 5.4%; 95% CI: 5.1–5.7%) [5, 6] and a 2 to 3 times higher incidence rate compared to NHW women [7]. Black women report experiencing higher disease burdens compared to NHW women, including longer symptom duration and lower health-related quality of life. This greater disease burden is typically linked to increased fibroid volume and more numerous fibroids [8]. Less is reported in the literature on uterine fibroid impact in Hispanic/Latina women; one survey of patient experiences found that Hispanic/Latinas reported greater disease burden compared to NHW and Black women [9].

In order to understand the disparate impact of uterine fibroids on women of color, we conducted a qualitative interview study of women diagnosed with uterine fibroids with a sub-analysis on the ethnoracial factors that emerged in the dataset. We triangulate our findings in the context of health disparities and equity as it relates to the disparate disease burden experienced by women of color.

Methods

Recruitment

This community- and patient-engaged research study was conducted in collaboration with The Fibroid Foundation, a nonprofit patient support organization that provides education and support for women experiencing uterine fibroids and their families [10]. A link to an online screening survey was disseminated through The Fibroid Foundation’s social media platforms (i.e., Facebook, Twitter, and Instagram). Inclusion criteria included a diagnosis of uterine fibroids, being of reproductive age (18–45 years old), English competency, and U.S.-based care. Participants who met inclusion criteria were sent consent materials, including HIPAA authorization. Interviews were conducted by phone between August 2018 and January 2019. Upon permission of participants, interviews were audio recorded. Interviews lasted an average of 39 minutes and were de-identified and transcribed verbatim. Participants received a gift basket created by The Fibroid Foundation following interview completion. This study received approval from the Mayo Clinic Institutional Review Board.

Data Analysis

We used NVivo 12 for qualitative analysis. Using the principles of grounded theory, a codebook of a priori and iterative themes was developed by the research team from analysis of n = 5 (10.4%) transcripts [11]. Two researchers initially coded n = 12 (25%) transcripts to consensus, using these additional transcripts to revise and finalize the codebook. One researcher coded the rest of the interviews with codes and trends discussed weekly among the research team to maintain research integrity. Here, we present data on the experiences of women of color (Black, Hispanic/Latina, and other) using the following codes: self-reported race and ethnicity, impact on quality of life, experience with provider, and family history/support (see Appendix for a description of relevant codes). Quotes were minimally edited for readability; racial descriptions are based on women’s self-reports.

Results

Demographics

A total of 107 women completed the screening survey and met inclusion criteria. Of these women, 57 (53.2%) returned their HIPAA consent or scheduled an interview. A majority, 47 (82.5%) participants from 16 different states, completed an interview. The ages ranged from 27 to 45 years old (M: 37.2 years ± 5.1 SD). Participants self-reported their race, ethnicity, and education (Table 1).

Table 1.

Selected sociodemographic characteristics

	Mean	Standard deviation
Age (years)	37.2	5.1
	n	Percent (%)
Race/ethnicity
Black/African American	24	51%
White/Caucasian	19	40.4%
Hispanic/Latina	2	4.3%
Other	2	4.3%
Education level
High school	1	2.1%
Some college	7	14.9%
2 year degree	2	4.3%
4 year degree	18	38.3%
Graduate/professional degree	19	40.4%
Regions
Northeast	10	21.3%
Midwest	7	14.9%
South	22	46.8%
West	8	17%

Impact on Daily Life

Participants reported fibroid symptoms that significantly disrupted their work and home life. Women described keeping an extra set of clothes on them at all times, ensuring they were always near a bathroom, disrupted sleep and fatigue, and profuse bleeding requiring the use of postpartum products and/or frequent (hourly or less) changes of menstrual hygiene products.

I was passing clots, three or four an hour. I was always in the bathroom at work, can’t go to the meetings, “Oh, just give me a couple extra minutes. Got to go to the bathroom first.”

— African American, 37 years old

Almost all women of color described incapacitating symptoms. Due to physical pain and bleeding, many women avoided physical activity and reported being on bedrest or homebound during part or most of their menstrual cycle.

I was feeling bloated. There was heavy menstrual periods. Another symptom was really, really, really, really painful cramping, menstrual cramping. It so painful that I could not even function that day. I couldn’t even—I couldn’t stand. I couldn’t get up.

— African American, 41 years old

I think they’ve not only impacted, they’ve altered my life. My quality of life is—I've had to have two or three good weeks, at the most, in a month. When it comes to before my period, during my period, it’s pretty bad. Because of the amount of fibroids I have, the pressure I feel on a daily basis, it’s just there.

— Hispanic, 36 years old

Several women reported episodes of severe hemorrhaging, acute pain, and/or anemia that were severe enough to prompt emergency room care.

With this amount of bleeding, it was heavy, gushing, filling pads up within 10 or 15 minutes. I was in the ER. My hemoglobin levels dropped to where I was anemic.

— African American, 37 years old

In some cases, the onset of symptoms occurred in public settings or in the workplace, resulting in feelings of embarrassment or social discomfort.

I was in Marshall’s, and all of a sudden— and I was in a dress—all of a sudden, a massive clot just came out of me, all over my leg and on the floor in front of people. It’s not the first time it’s happened either.

— Middle Eastern/Indian Caribbean, 27 years old

As a result of their symptoms, many women reported missing 1 day or more of work each month or making alternate working arrangements. Table 2 reports the career sectors for the women of color participants. Women who worked in physically intense professions were more likely to report work-related impacts due to difficulty in standing for longer periods of time or the need for frequent restroom breaks. Others indicated that they did not have the option to take time off work on symptomatic days.

Table 2.

Career sectors for the women of color participants

	n	Percent (%)
Career sectors	28
Healthcare	6	21%
Arts/entertainment	3	11%
Insurance	3	11%
Information technology	2	7%
Marketing/sales	2	7%
Nonprofit	1	4%
Education	1	4%
Business	1	4%
Manufacturing	1	4%
Retail	1	4%
Real estate	2	7%
Government	2	7%
Customer service	1	4%
Lobbyist	1	4%
Not currently working	1	4%

I’ve dealt with pain a lot, so I have a pretty active job, so it’s pretty hard to stay home at—I work from home, but I still have to get out in the field for my job, so it’s not always easy. I don’t always have the option to stay at home and [be] with my heating pad, ‘cuz my stomach hurts, or be close to the restroom so that when I am on my cycle, I don’t risk having any leaks, and I always wear dark bottoms.

— Black, 32 years old

Women of color described missing social occasions, postponing travel, or arranging vacations around their menstrual cycles. Women often felt that the constant planning around their symptoms was cognitively and emotionally burdensome.

I got to the point where, evening hours, trying to go to sleep, I couldn’t sleep the first two or three days of my period because it was super heavy and I have to be awake every hour to be able to change my pad. I had a lot of—it was a heavy flow, lower, dull backaches. There were a couple of times I had to call off work because I had also excruciating headaches that accompanied my period on a monthly basis.

— African American, 44 years old

Women described decreased self-esteem and/or feeling as if they were not sexually or relationally desirable as a result of uterine fibroid symptoms. Several women felt embarrassed or recalled situations where they felt responsible for disclosing their diagnosis or explaining their fibroid symptoms to others, especially if they were asking for work accommodations, bled through clothing, or were asked personal questions such as if they were pregnant due to their abdominal size.

I remember having a male boss, and he wasn’t too sure what was going on. He was very nice. He was like, “Well, I don’t understand why you just can’t take any tea or something.” It’s a little hard.

— African American, 45 years old

Impact of Race and Ethnicity on Uterine Fibroid Treatment

Many women in this cohort described negative interpersonal provider-patient interactions. In a few cases, women felt discriminated against or poorly treated due to their race.

Something else, I meant to tell you, he was even throwing “hysterectomy” at me, and I was just like, “Why?” I feel like, especially with black women, that’s always the next thing.

— Black, 42 years old

One African American woman described feeling stereotyped in response to a referral to Planned Parenthood for family planning services, rather than receiving care for her uterine fibroids, even though she was not sexually active at the time.

I was this abnormal person that nobody has ever heard of because most African Americans are sexually active, according to statistics, you know. It was, like, for most of us, especially African American women, we got referred to, you know, Planned Parenthood. I got that referral. It was pretty discouraging. I was, like, I don’t have—I don’t want to—I’m not—it was like I was treated so unfairly that I kept switching doctors because I wanted to find someone that could listen to me. That could treat me like a person.

— African American 41 years old

In other instances, some women felt they were only offered certain treatment options due to their race or insurance status, rather than their clinical profile.

I’m also cognizant of the fact that the physicians will often also “rank” your health insurance, so I’ve had conversations with my OBs about which insurance policies do they prefer because I think that if you have an insurance policy that they actually prefer working, has a higher-paying rate for them, they’re more likely to provide you with better care.

— Haitian American, 31 years old.

A few participants reported feeling as if they were steered away from uterine-sparing treatment options and that provider responses suggested they were unworthy of motherhood due to their race, insurance status, or other socioeconomic characteristics.

For instance, my last hospital visit, I felt like I don’t have a voice. Like you don’t think that I’m worth [of] being somebody’s mom, or that my life can improve someway, somehow. That fibroid—it’s just take your womb out. Take your uterus out. It’s not about trying to fight, just be helped to find a solution.

— Black Islander, 33 years old

Some women expressed distrust and skepticism towards the medical system and the treatment options offered by providers. A few women referenced historical injustices against African Americans such as the “Tuskegee Study of Untreated Syphilis in the Negro Male” or their own prior negative experiences as a woman of color with the healthcare system. For some women, this resulted in care avoidance or seeking a racially concordant provider.

I have now chosen to get a secondary physician who specializes in fibroids and who is of African American descent because I think that having a physician that can understand the cultural context and the implications of having this diagnosis as a woman of color is much helpful for me. (…) Again, I take an approach, less intervention as possible and less interactions with the US healthcare system as possible ‘cause they don’t have a great track record with women of color.

— Haitian American, 31 years old

Women of color describe financial and work-related considerations in their evaluation of treatment options, such as the significant recovery time of an open myomectomy or hysterectomy.

Then I presented [to provider] the issue of finances, as far as me being outta work for six to eight weeks.

— African American, 45 years old

In some cases, financial concerns resulted in the postponement of needed surgeries until they were able to afford the surgery and time away from work.

Then, at that time, I was gonna try to have them removed, or have it removed, but then I lost my job. I lost my job, so I didn’t have insurance. I pushed, put it on the back burner and I just dealt with the heavy bleeding for maybe a year or two.

— African American, 32 years old

Participants recounted that cultural and familial factors also influenced their evaluation of diagnosis, personal management, and treatment options. Several women had a family history of uterine fibroids but were unaware of it because women’s health issues were not openly discussed in their culture or family.

I think that generational where I’m more of a—I’m pretty much an open book bein’ transparent to help folks, and they’re like, nope, you just keep that stuff to yourself because it’s private. It’s I think once I started this—once I had it and they saw me, and I think once I went for my—what procedure or what number of procedures I went through, that’s when we really started talkin’ about it as a family.

— African American, 38 years old

Some women expressed a belief that there was a cultural barrier to fibroid treatment or personal support, especially in immigrant families. Women felt that their families were supportive but did not fully understand the impact of symptomatic uterine fibroids or that they did not consider heavy menstrual bleeding to be a medical issue.

Yeah, but I grew up in the Caribbean so it was always drink tea, drink ginger beer, put a warm rag, take tablets, you know? It was never something that they would say, “Oh, this is an issue. Let’s bring you to the doctor.”

— Black Islander, 33 years old

It was funny, because before they say—because my belly was so huge, they say that, oh, you getting so much weight. You have to lose weight. You have to do exercise. Then when I found out why is my belly so huge, I show them. Oh, because you guys thought I was fat, but is something else. With my ma, I just—every time I go to the doctor, I tell her everything that happens see the doctor.

— Spanish Panamanian, 37 years old

Discussion

The women of color in this study generally described more severe symptoms than generally reported, resulting in significant disruption to daily life with personal and professional impacts. Heavy bleeding, in particular, required constant planning to avoid staining clothes or furniture and often resulted in social isolation. Some women were in a position to request days off or work-from-home arrangements for all or part of their menstrual cycle, but others worked in retail or other sectors where this option was not available. A national survey on the burden of uterine fibroids found that compared to NHW women, Black women, regardless of education or employment status, were more likely to report employment concerns including missed work days, fear of losing their job, and interference with work-related responsibilities suggesting a distinct race-related impact of uterine fibroids [12-14].

Black women were also more likely to express financial concerns regarding symptom management and when evaluating treatment, including the cost of diagnostic testing and surgery and the recovery time [15]. Black women undergo open myomectomy more than NHW women because uterine fibroid size and number often preclude minimally invasive approaches [16, 17]. Open approaches are associated with longer recovery time, typically 4–6 weeks for abdominal myomectomy [18]. Black women also have longer hospital stays and longer surgical recovery time [19] and undergo abdominal hysterectomies at a higher rate than NHW women, regardless of insurance [20, 21]. Accordingly, women of color incur additional direct (e.g., treatment and medical visits) and indirect (e.g., loss of work hours) costs ranging from $2200 to $15,952 annually [22]. Surgical costs alone can range from $6720 to $21,805, depending on insurance coverage and inpatient versus outpatient procedure [23]. In our cohort, women of color likewise reported treatment delays due to lack of insurance coverage and/or the inability to afford time off from work for the length of the recovery period [9, 12].

Participants also described avoidance of care as a result of perceived discrimination and racial stereotyping, particularly when uterine-sparing treatments were not discussed or providers were insufficiently supportive of their fertility preservation or reproduction goals. Some Black women indicated a distrust of the healthcare system as a result of personal experiences or a history of systemic discrimination against patients of color. A robust body of research suggests that many Black women share these concerns when seeking many forms of gynecological treatment [24-29]. Experiences of racism and discrimination are embedded in the gynecological care of Black women, including forced sterilization and experimentation on enslaved women [30]. Routine gynecological care and management of uterine fibroids are necessary for early diagnosis and treatment; if clinical encounters are perceived as biased or discriminatory, it will impede trust in providers and timely access to medical care [31]. Participants in this study also underscored the intimate and personal nature of gynecological conditions and their care, which may further disincentivize care seeking.

Cultural factors influence perceptions of the severity of symptoms, the medicalization of heavy menstrual bleeding and pain, and subsequent care seeking. Women from immigrant families described family members downplaying their symptoms. This may be a result of family history of uterine fibroids and the perception that heavy menstrual bleeding is normal. A qualitative study by Ghant et al. described treatment delays as a result of the normalization of heavy bleeding and symptoms [32]. Additionally, many women of color were unaware of uterine fibroid family history until their own diagnosis, which may also prevent accurate perceptions of menstruation and symptom onset.

Genetic and environmental factors that may explain the disproportionate disease burden by Black women are under investigation; limited evidence suggests that uterine fibroids may be a biologically distinct disease in women of African descent. An admixture mapping study examining genetic ancestry and disease risk noted that fibroid number was associated with high percentage of African ancestry [33]. A trans-ethnic genome-wide associated study also found that ancestry-specific alleles may influence fibroid risk [34]. Other race-specific factors include vitamin D deficiency in Black women that has been linked to an increased uterine fibroid risk [35]. Evidence on the prevalence and impact of uterine fibroids is limited in other ethnic groups including Hispanic and Asian women; greater study is needed especially since some evidence exists suggesting a similar disease profile in Hispanic women [9]. Regardless of the possible biological factors, we see that women of color have other ethnoracial impacts. Given all the evidence showing disproportionate impact in women of color, special attention must be given to the impact of uterine fibroids and its intersection with lived experiences with discrimination and other ethnoracial concerns. The impact of uterine fibroids on women of color also needs to be understood within the larger context of enthnoracial health disparities in the USA and the role of social determinants of health in disparities. Systemic changes — including universal access to medical insurance and specialized care services — are required to ensure equitable access to patient-centered treatment options and support for uterine fibroids [36]. Improved education in OB/GYN and emergency medicine training programs on the signs and symptoms of uterine fibroids, differences in presentation, and appropriate management may also increase patient/provider concordance, facilitate entry to care, and avoid provider cycling.

Strength and Limitations

One strength of this study is the significant portion of the sample identified as Black, Hispanic/Latina, or other minority race/ethnicities that are underrepresented in the literature and overrepresented in women with uterine fibroids. The use of qualitative interviews provides opportunities for in-depth exploration of participant experiences that may not be achieved through other methodologies. This process allowed participants time to share their experiences and elucidate on areas of care, quality of life, and factors that contribute to less than culturally appropriate treatment or management options.

A limitation of this study is selection bias; women with more negative experiences may have been more likely to participate. Additionally, as social media accounts of a patient support organization were used to recruit participants, this may have excluded participants who have less access to the internet or who are not involved with social media or patient support. While women with lower educational attainment were included in the sample, this cohort was generally more educated than the general U.S. population. Their experiences may not be reflective of those with less ability to access education and gynecological care for uterine fibroids. Finally, the experiences of women participating in this study may not be generalizable to other women of color. While two women identifying as Hispanic/Latina were included in the sample, future qualitative studies are in development to focus on the experiences of uterine fibroid patients from this demographic.

Conclusions

Women of color have distinct experiences with uterine fibroid treatment and management that should be investigated further. Congruent with a robust body of evidence demonstrating that Black women have disproportionate disease burden, women in this study reported quality of life concerns that impact their vocation and psychosocial well-being. Special attention should be given to the intersection of uterine fibroid disease burden with other ethnoracial concerns, including historical mistreatment of women of color and racism. Participants of color described ethnoracial, socioeconomic, and/or cultural factors that influenced their experience and treatment decisions. Specifically, perceptions of bias and interpersonal racism have the potential to influence access, quality, and continuity of care. As a first step towards improving the patient experience of women of color with uterine fibroids, providers and health systems should focus on greater education and awareness of ethnoracial factors — including awareness of historic medical distrust and cultural influences in the normalization of symptoms — to mitigate barriers to early diagnosis and timely care.

Appendix

Code	Description	Quote Example
Race and Ethnicity	Any comments related how patient’s race or ethnicity influenced care or interaction with health care system	“Again, I take an approach, less intervention as possible and less interactions with the US healthcare system as possible ’cause they don’t have a great track record with women of color.”
Impact on Quality of Life	Participants’ discussion of how uterine fibroids impact their quality of life (work, personal relationships, etc.)	“For the first two days, I would normally have to change my pad and my tampon every hour on the hour. If not, I would soak through my clothing or have embarrassing moments.”
Experiences with Provider	Participant description of the interaction with the provider who delivered the diagnosis	“I wish my first doctor actually paid more attention to it and I realize how severe it was when it was diagnosed.”
Family History/Support	Social support of family members other than spouse/partner	“We talked about different options like my cousin has had her surgery. I remember having that conversation with her about why’d she have the surgery.”