Dhaurali S. Race as a Risk Factor: Public Health Interventions for Uterine Fibroids Among African American Women. HPHR. 2021; 30.
Uterine fibroids are benign tumors found in the smooth muscle layer of the uterus affecting 70-80% of American women by the time they reach their fifties (Stewart et al., 2017; Noel et al., 2019). The frequency of the condition is likely underestimated in many women who experience it both asymptomatically and symptomatically, with several cases remaining undiagnosed (Stewart, 2017). Due to the majority of fibroids being non-cancerous, mortality associated with them are low (Dillard, 2016). Though fibroids are very rarely malignant, 30% of cases cause significant morbidity physically and mentally (Donnez & Dolmans, 2016). Symptoms include heavy menstruation, abnormal uterine bleeding, impacts on bladder, bowel, and pelvic nerve functions, lower back pain, muscle aches, and detrimental effects to reproductive health (Dillard, 2016; Noel et al., 2019). Incidence rates for fibroid diagnoses were highest for women 45–49 years, 240.3 per 10,000 woman-years in 2014, and for black women across all years (Yu et al., 2018). Annual direct and indirect costs related to uterine fibroids in the United States alone is as high as $34.4 billion, though this estimate would be even greater considering the other pertinent diseases and conditions fibroids are linked to such as obesity, infertility, heart disease, atherosclerosis, diabetes, and high blood pressure (Sengoba et al., 2017; Laughlin-Tommaso, 2016).
The prevalence of uterine fibroids is especially high in the U.S., but it is important to note that among the women impacted, 70-90% are African American (Sengoba et al., 2017; Noel et al., 2019). African American women have a higher cumulative incidence, earlier age of onset, and overall higher burden of disease with uterine fibroids (Ghant et al., 2016; Dillard, 2016; Noel et al., 2019). The Michels et al. study concluded women with uterine fibroids were “more likely to be older, black, and overweight or obese” (2016) and several other studies have cited black race as a risk factor for uterine fibroids (Noel et al., 2019; Dillard, 2016; Stewart, 2017). African American women are also more likely to have more than one uterine fibroid, the size of their fibroids are larger in diameter, their uteri weigh more, and they suffer more severe symptoms when compared to white women (Dillard, 2016). In fact, Black women have a 9.4-fold adjusted odds of developing fibroids and have disproportionately higher morbidity and mortality from fibroids’ comorbid chronic diseases (Zhang & Jemmott, 2019). African Americans have the highest age-adjusted obesity rates with nearly 80% of African American women being overweight or obese which is a risk factor for uterine fibroid development (Burton et al., 2017).
This paper will explore public health interventions for Black women diagnosed and at-risk for uterine fibroids using a Social Ecological Framework. It is important to note that uterine fibroids have very few, if any, public health evidence based-interventions as this condition is mostly treated surgically and therapeutically, but African Americans suffer disproportionately with fibroids and associated comorbidities such as diabetes, physical inactivity, fatty food consumption, and are impacted by social and environmental factors that also increase their risk. Observed and peer-reviewed evidence-based interventions for these comorbidities of uterine fibroids were examined for the purposes of this paper to set forth examples of how previously utilized interventions can and should be adapted for uterine fibroids in African American women.
African American women experience a higher burden of disease regarding uterine fibroids due to their historical and ongoing marginalization on the basis of income, education, and housing among several other social factors. Inadequate access to healthcare, low quality clinical and prevention care services, and several other health disparities relate to populations with lower socioeconomic status (Dillard, 2016). The NIH’s Environmental health sector states that childhood socioeconomic markers such as poverty, lack of nutrition, and minimal time for meals were associated with the incidence of fibroids and these markers are dominant among Black individuals (Laughlin-Tommaso, 2016). As argued in Phelan et al., higher socioeconomic classes have easier access to financial and social resources such as money, power, status, prestige, and knowledge from their respective communities that allow them to systematically escape risk and seek out prevention from disease whereas lower socioeconomic classes are trapped unable to avoid risks of morbidity and mortality (2015).
Research shows women of lower socioeconomic status have limited access to fibroid treatment (Laughlin-Tommaso, 2016). African American women earn approximately 10.9% less than white women and three times less than white men doing the exact same jobs (Dillard, 2016). It is evident that there is an income gap when comparing black and white wealth in America as the median household income for black individuals is three-fifths that of whites (Phelan et al., 2015). Because black women earn less compared to other groups, they are not able to afford constant medical visitations or the expensive, but more effective therapeutic treatments for uterine fibroids leading to poorer health outcomes and surgical complications. With uterine fibroids impacting reproductive capability, studies have reported low income and less than high school education women generally have the least access to fertility services (Laughlin-Tommaso, 2016). Black women and women belonging to racial minorities are overrepresented in these low income, low education, and low socioeconomic groups who seek fertility services less frequently (Laughlin-Tommaso, 2016). Lack of fertility access to lower income women who are often Black leads to mental and social health issues related to reproductive disillusionment caused by uterine fibroids (Stewart, 2017).
Psychological stressors relating to minority group experiences (minority stress) have been shown to lead to poorer health outcomes (Noel et al., 2019). Acute and chronic stress have been linked to mortality based on discrimination, which has been conceptualized as a common social stressor (Phelan et al., 2015). Michels et al. reported chronic stress, discrimination, affordability of care, and relatives’ fibroid experiences impacted how women responded to pain and if treatment was sought in uterine fibroid cases (2016). Studies have indicated higher stress levels impacting African American women when compared with women of other races (Noel et al., 2019). Higher rates of chronic stress among black women were noted when addressing interpersonal relationships, work environments, and cardiac health when compared to white women. Women who reported higher levels of perceived stress were more likely to have uterine fibroids as fibroids and atherosclerosis were shown to develop in women with higher levels of perceived stress, many being from African descent (Noel et al., 2019). It is possible that the combination of perceived or actual chronic or non-chronic stress creates biological inflammatory pathways in women resulting in higher uterine fibroid morbidity, and since black women are more inclined to experience stress, they are more impacted by uterine fibroids (Noel et al., 2019). Additionally, evictions and the lack of housing are substantial stress inducing events. Women who are disproportionately evicted in the US are often poor, black women, mainly mothers, as over 1 in 5 black women report having been evicted in their adult life compared to reports of 1 in 15 white women (Desmond, 2016). Evictions and housing inequality adds to levels of chronic stress (Desmond, 2016) which have been shown to lead to health complications and the development of uterine fibroids (Michels et al., 2016).
Neighborhoods and geographical residences impede the health of Black women with uterine fibroids greatly. Research shows women living in rural areas have limited access to fibroid treatment (Laughlin-Tommaso, 2016). Regardless of income, black Americans are more likely to live in poorer neighborhoods with worse socioeconomic resources as segregated black neighborhoods contain two-three times as many fast-food restaurants than any comparable white neighborhoods and have higher rates of obesity, BMI, and hypertension which are risk factors for uterine fibroid development (Stewart, 2017). Neighborhoods with a higher population of black residents report having fewer board-certified physicians, technology resources, specialists, and higher rates of negligence and mortality (Phelan et al., 2015). For women over the age of 35, exposure through ingestion, inhalation, and dermal absorption of endocrine-disrupting chemicals increased the risk of developing uterine fibroids (Katz et al., 2016). Such chemicals can be natural, but dominantly are man-made and industrial such as common pollutants, pharmaceuticals, and pesticides (Katz et al., 2016). Endocrine-disrupting chemicals are linked to various uterine fibroid risk factors such as diabetes, obesity, heart disease, reproductive problems, and neurodevelopmental disorders (Katz et al., 2016). Contact with these carcinogens is oftentimes not controlled by the individual, but based on their neighborhoods and geographical locations (if they live next to industrious, carcinogen emitting factories versus a clean suburb), and as previously stated, poor black individuals usually live in these dangerous areas.
With technology, the field of public health is changing, and mobile applications have been making strides in the health industry as it was reported in a 2015 national survey that 58% of mobile-phone users had downloaded a health-related/fitness application (Krebs et al., 2015). African Americans are among the most avid users of mobile apps, though there exist few evidence-based mobile application interventions increasing physical activity available for this population affected disproportionately with chronic diseases such as obesity, hypertension, cancer, type 2 diabetes, and cardiovascular disease most often resulted due to inactivity (Whitley et al., 2020; Zhang & Jemmott, 2019). It is important to note that some of these app interventions with behavior-change techniques embedded into their foundation have the potential to be “powerful persuasive” technologies in increasing physical activity and healthy living (Zhang & Jemmott, 2019). The fitness mobile application PennFit is one such an intrapersonal intervention which aims to increase physical activity among 18-35 year-old African American women in Philadelphia, PA through peer directed support and communication (Whitley et al., 2020; Bland & Sharma, 2017). PennFit is similar to other health apps that monitor daily steps, notify participants to exercise, log activities, and track physiological changes, but it also provides group support to the African American women users through social support, observational learning, and online group forums for peer engagements having an instant chatting feature within the app (Whitley et al., 2020; Core Principles, 2020; Zhang & Jemmott, 2019). The social networking and support system embedded within the app for the African American women allows for the influence of positive behaviors around physical activity. In similar studies, it was reported that women expressed an increase in motivation to exercise through group participation which is consistent with other studies that suggest social support increases physical activity engagement in African American women (Whitley et al., 2020; Bland & Sharma, 2017). This app intervention is applicable for uterine fibroids as exercise has a remedial effect on the endocrine system in charge of balancing bodily hormones that cause fibroids as exercise relieves stress that may strain these same systems (Ismail & Mohamed, 2016).
This intrapersonal intervention was tested more specifically in the Zhang & Jemmott study where African American women using PennFit were randomized either into an online-group intervention designed to increase social support or an individual condition which served as the control (Zhang & Jemmott, 2019). After analyzing the data, the PennFit mobile app intervention was most productive and useful among the African American women engaged within the small groups with increased number of logins into the app, more than 90 min/day engagement was higher in the small groups, this engagement in the small group increased over the 3-month-study period, and there were increases in activity within the small group individuals. Regardless of group, the PennFit application showcased a decrease in participants’ BMI and increased number of performed push-ups which showcases the effectiveness of this mobile app intervention for physical activity in African American women (Zhang & Jemmott, 2019). PennFit is among thousands of fitness and health-related apps, but the effectiveness of these such applications are dependent on if their users use the app consistently and this randomized study suggests that small groups for supportive interactions increase app usage which indicated that mobile apps are a promising intervention platform that can be used when addressing problems of obesity related to physical inactivity (Zhang & Jemmott, 2019).
The LIFE Project was a 10-week church-based weight loss intervention program designed to reduce obesity rates in African American women in rural South Carolina. The intervention was based on the primary outcome of weight loss with implementing dietary fruits and vegetables and engaging in daily exercise as important strategies to consider when losing weight (Parker et al., 2010; Burton et al., 2017). The curriculum was created and led by the church organization and arranged into three different sections: dietary practices where the women would learn more about nutrition and foods, daily physical activities, and discussion group sessions. The women who underwent the spiritual treatment experienced statistically significant reductions in weight, systolic blood pressure, BMI, and also saw improvements in their physical activity (Burton et al., 2017). In the Parker et al. study, the spiritually-based and non spiritually-based programs in the LIFE Project were pilot tested, each utilizing a pretest, posttest design. Results demonstrated that both methods in the LIFE Project led to significant reductions in weight for the African American women, but the spiritually-based intervention led to additional improvements (2010).
With the LIFE Project church organizational intervention being able to educate and reach more people, this prevention program is promising in aiding African American and their higher burden of disease with uterine fibroids as the Ismail & Mohamed study concludes that a diet of excess meat and fats contribute to a higher prevalence of uterine fibroids, whereas higher intakes of fruits, grains, and vegetables alongside physical activity is associated with lower prevalence of uterine fibroids (2016). Fruits and vegetables are great sources of dietary fibers, vitamins, minerals, and antioxidants that may help convert estrogen into its weaker form reducing the risk of fibroid development, but are generally more expensive and inaccessible to lower socioeconomic individuals in the target population (Ismail & Mohamed, 2016). With the specific population being African American women, the program was culturally tailored through the community church. Various qualitative research studies have shown a relationship between health and spirituality in African Americans where their struggle to lose weight intersects with their spirituality and participation in faith (Robinson, 2008; Burton et al., 2017). Some researchers suggest this is due to the respect given to clergy members and the dominance of faith in this community which influence not only spiritual behaviors, but can impact health behaviors such as physical activity and dietary practices as well (Robinson, 2008). It has been shown in the LIFE Project and in other studies that the organizational setting of the church is an ideal setting where meaningful engagement of health behaviors are supported by spiritual scriptures (Burton et al., 2017).
Lay Health Advisors are trained community members who work as trusted liaisons in various clinical and community organizations that work together to prioritize improving community health delivering health education and support (Core Principles, 2020; Shelton et al., 2017). A very popular and renowned Lay Health Advisors program and community evidence-based intervention is The National Witness Project that has effectively increased breast and cervical cancer screening among African American women through the delivery of health education, navigation, and support in a range of community-based and organizational settings. The Lay Health Advisors at The National Witness Project are trained community members who share similar social, economic, cultural, and linguistic characteristics with the population of interest (Shelton et al., 2016). The National Witness Project has been replicated and implemented nationally across 40 sites over the past 25 years reaching more than 15,000 women annually with over 400 Lay Health Advisors, and is considered one of the National Cancer Institute’s top “Research Tested Intervention Programs” (Shelton et al., 2017). This intervention has employed African American women to serve as Lay Health Advisors providing culturally appropriate education, empowering messages, resources, navigation, and narratives about their own breast and cervical cancer experiences (Shelton et al., 2017) which is a promising public health intervention for African American women with uterine fibroids. In fact, a recent study reporting on the social aspect of managing fibroids found that African-American women build strong bonds and relationships with each other seeking out others in similar situations to themselves (Stewart et al., 2013). Therefore, having Lay Health Advisors similar to the ones employed at The National Witness Project providing support to women experiencing uterine fibroids is very beneficial for this population.
For this paper, the community-level evidence-based intervention, The National Witness Project, in the socio-ecological model addresses the need for supporting African American women at risk for cervical and breast cancers through a variety of education and support programs. By employing Lay Health Advisors who encourage breast cancer screening and mammography among underserved African American women in safe community locations, their goals and initiatives are met and enacted through different community organizations for these women (Shelton et al., 2016; Shelton et al., 2017; The Witness Project, 2020). This intervention is delivered in churches, schools, local clinics, and other community centers and settings led by African American breast and cervical cancer survivors who use experiential story-telling techniques in order to teach women the importance of taking responsibility for their own health, guide women on how to perform a breast self-examination, and provide information on early detection and screening services (The Witness Project, 2020). Similar to the LIFE Project, among the community settings The National Witness Project is located in the church which is a logical location for this intervention for African American women as studies have shown a relationship between health and spirituality in this population (Robinson, 2008; Burton et al., 2017). Church-based programs for The National Witness Project were held immediately after regular worship services or with the Sunday School sessions and a hymn/prayer began and ended these close confident services. Since the church is a dominant location of interaction and community for the specific population, this allows as many women as possible to be involved and exposed to the intervention (The Witness Project, 2020). The National Witness Project has been replicated and implemented nationally across 40 sites over the past 25 years reaching more than 15,000 women annually with over 400 Lay Health Advisors, and is considered one of the National Cancer Institute’s top “Research Tested Intervention Programs” (Shelton et al., 2016; Shelton et al., 2017). One quasi-experimental pretest and post-test study was conducted for rural, underserved African American women in eastern Arkansas utilizing The National Witness Project. Key findings showed that mammography screening behavior for women ages 40 years and older significantly increased by 12% (The Witness Project, 2020). The National Cancer Institute also gives The National Witness Project an EBCCP score in Dissemination of information capability a 5/5 and RE-AIM scores for Reach and Adoption over 80% (The Witness Project, 2020).
Similar social determinants of health involving uterine fibroids are present for breast and cervical cancers such as lower socioeconomic status (low income, low education), chronic stress, discrimination, affordability of care, access-related factors, psychological factors (fear and fatalism), lack of knowledge and awareness, and misunderstanding of diagnosis (Phelan et al., 2015; Noel et al., 2019; The Witness Project, 2020). The Ghant et al. study and The Witness Project found that delayed diagnosis for uterine fibroids and cancer screening was womens’ limited knowledge and limited perceived risk about the conditions (2016; 2020). The majority of women cited their surprised responses when they were first diagnosed with uterine fibroids as 48% of all the women reported they had no previous knowledge about the condition (Ghant et al., 2016). Some women revealed their frustrations about their lack of knowledge due to the high incidence of fibroids, later finding out that some of their family members have it, and that education/health systems have failed them (Ghant et al., 2016). The lack of knowledge and understanding about the risks involved with uterine fibroids… impact a woman’s ability to take control of her own health. Because women who are diagnosed have no knowledge of their condition, they also are not able to seek out appropriate treatment because they do not even realize it is necessary (Ghant et al., 2016). From the other half of participants that knew of fibroids prior to their diagnoses, 62% of these women believed they were not at risk for developing the disease. Women who do not perceive themselves at risk are less likely to treat their fibroids or engage in treatment related activities. In order for women to take action in being diagnosed and properly seek treatment, it is essential that they have an accurate depiction and understanding of their own susceptibility towards fibroids (Ghant et al., 2016). The National Witness Project is a theory-based program designed specifically for African American women which works to lessen the burden of these social determinants and delayed diagnoses/screenings as the project is federally funded and implemented under the NIH’s National Cancer Institute. This enables underserved African American women to gain awareness and access to behavior modification programs, as well as gives employment and leadership opportunities to African American women cancer survivors (The Witness Project, 2020; Shelton et al., 2016; Shelton et al., 2017).
The National Witness Project’s focus on addressing social and health determinants among African-American women is highly valued by Lay Health Advisor programs as having the program rooted in the African American community and faith-based organizations is an asset (Shelton et al., 2017). It is important to recognize the essential role Lay Health Advisors play in medical and healthcare settings especially for African American women who historically have faced and continue to face racism and discrimination in these medical settings that cause mistrust in the medical institution as a whole (Shelton et al., 2017; Murray, 2015). Unfair treatment of African American women in healthcare may be due, in part, to lack of representation. In 2018, only 5% of physicians in the country were Black while 75% were white (Ibrahim & Zore, 2020). Black Americans who have chronic stress stemming from institutional and interpersonal racial discrimination are at a higher risk for mortality, hypertension, anxiety, depression, and diet-related diseases (Bleich et al., 2019; Murray, 2015; Ibrahim & Zore, 2020). Therefore, provider-patient relationships are often racialized, and many Black Americans receive their health information from white doctors. Patients of color are less likely than their white counterparts to receive quality care and communication from their medical providers (Miller & Peck, 2019; Murray, 2015). In order for clinicians to provide the best care for their patients, it is critical that they understand the differing beliefs, perceptions, and knowledge regarding uterine fibroids and the level of risk among different populations (Ghant et al., 2016). Therefore, Lay Health Advisor programs hold tremendous promise in the reduction of health/healthcare disparities and addressing their social determinants as most Lay Health Advisors are members who themselves have or have had the specific condition and have undergone treatment and in the National Witness Project, the advisors are all Black women (Shelton et al., 2017). Research suggests that The National Witness Program is effective in improving behavior changes surrounding cancer screenings for racial and ethnic minority women who experience greater structural barriers to healthcare (Shelton et al., 2016).
Black women are not only diagnosed with uterine fibroids more, they are diagnosed younger, have larger lesions, multiple fibroids, and are set up to fail in the US Healthcare system with more costly and painful treatments (Dillard, 2016). Despite their higher level of burden, African American women only make up approximately 15% of all uterine fibroid studies (Laughlin-Tommaso, 2016). This needs to change as Black women should receive more attention and resources to combat uterine fibroids which greatly burden them more than any other ethnic and racial population. Of the resources available to them, the majority are surgical and as uterine fibroids have very few, if any, public health evidence based-interventions for the population of African American women. These circumstances for black women are unfair and affect their livelihoods and quality of life even though the hindering disease of uterine fibroids can be preventable through social and economic intervention. This paper examined three existing and promising evidence-based interventions for African American women within three levels of the socio-ecological model for physical activity, dietary practices, and breast and cervical cancer screenings due to the similarities of risk factors, health determinants, and the African American women population examined. The best evidence-based intervention found, and the one to recommend for the specific population of uterine fibroid affected women, is The National Witness Project. This community intervention has made tremendous strides in alleviating racialized provider-patient relationships and institutional mistrust for Black women due to the program’s leaders, the Lay Health Advisors, being similar Black women from the community and their respective peers. This intervention is also the most noted for success by the National Institute of Health’s Cancer Institute and federally funded and implemented in a wide-range of states in the USA (The Witness Project, 2020).
It is important to note that the three interventions discussed above are interventions involving pre-dominantly religious, Christian African American women and affiliated organizations. There are many non-religious African American women in the United States of America, thus future interventions should take heed of the necessity of social uterine fibroid interventions and evidence-based practices for the diverse array of African American women in the USA.