TY - JOUR
AU - Sanchez,, Ninive
AB - Abstract The National Institutes of Health has identified polycystic ovary syndrome (PCOS) as a major public health problem for women in the United States and recommends establishing multidisciplinary programs to improve the awareness of the public and health care providers regarding management for women with PCOS. This article argues that individuals with PCOS are marginalized due to the syndrome’s misleading name; its underrepresentation in research; lack of culturally and gender-sensitive standards of care; debates about the contraceptive mandate; and stigmatization due to symptoms that do not conform to dominant social constructs of beauty, femininity, and womanhood. The article directs readers to key publications on the assessment and treatment of patients with PCOS, discusses a case study that illustrates the role of a social worker in treating an adolescent with PCOS as part of a multidisciplinary team, and emphasizes the importance of integrating behavioral health in the treatment of patients with PCOS. behavioral health, marginalization, polycystic ovary syndrome, social work he National Institutes of Health (NIH) Office of Disease Prevention (ODP) has identified polycystic ovary syndrome (PCOS) as a major public health problem for women in the United States (NIH ODP, 2012). However, the needs of diverse groups of women with PCOS remain largely unmet due to the practices and policies that marginalize women based on their sex and gender. This article provides a framework to understand the marginalization of women with PCOS at the institutional, sociocultural, and individual levels. Marginalization in this context refers to a system that, intentionally and unintentionally, excludes individuals with PCOS from the resources, rights, and opportunities they require to have a healthy quality of life. Specifically, this framework argues that individuals with PCOS are marginalized due to the syndrome’s misleading name; its underrepresentation in research; the lack of culturally and gender-sensitive standards of care; debates regarding the contraceptive mandate; and stigmatization due to the symptoms that do not conform to dominant social constructs of beauty, femininity, and womanhood. PCOS The prevalence of PCOS among adult women (18–45 years of age) in the United States is approximately 7 percent (Azziz et al., 2004); compare that percentage with 9 percent of the population with diabetes as a frame of reference. However, research conducted with a community sample of women (27–34 years of age) in the United Kingdom suggests that the prevalence of PCOS may be as high as 21 percent depending on which of the three diagnostic criteria for PCOS is used. In addition, using two of these criteria—NIH and Rotterdam—about 70 percent of women with PCOS symptoms are estimated to be undiagnosed (March et al., 2009), implying that a considerable number of women are unaware of what is happening with their bodies. Women with PCOS describe the pursuit of answers regarding their symptoms as emotional, confusing, frustrating, devastating (Snyder, 2006), and exhausting (Williams, Sheffield, & Knibb, 2015). In addition to visiting several doctors before receiving the appropriate diagnosis, some women report self-diagnosis by searching for information on the Internet (Crete & Adamshick, 2011). According to NIH, there is a lack of awareness regarding PCOS among the general public and health care providers in the United States (NIH ODP, 2012). This widespread lack of understanding of PCOS is largely due to the condition’s misleading name, which suggests the problem is solely cysts in the ovaries. The name can perpetuate sexism by confining the syndrome to women’s reproductive organs, which can lead to attitudes and practices that undermine women’s access to comprehensive care. However, PCOS is a complex condition that affects the reproductive, endocrine, and metabolic systems. It is characterized by a range of symptoms, such as irregular or absent menstrual periods, hirsutism (excess hair growth on the face and body), weight gain, acne, ovarian cysts, and alopecia (hair loss) (NIH ODP, 2012). PCOS increases a woman’s risk of developing type 2 diabetes, cardiovascular disease, infertility, anxiety, depression (Himelein & Thatcher, 2006), and poor health-related quality of life (Li et al., 2011). PCOS can begin in adolescence and worsen across the life span if untreated or poorly managed. The lack of public and clinical awareness regarding PCOS, coupled with variations in diagnostic criteria (NIH ODP, 2012) and differences in diagnostic practices among providers from different specialties (Sivayoganathan, Maruthini, Glanville, & Balen, 2011), contributes to misdiagnosis, delayed diagnosis, and lack of comprehensive care of adolescents and women with PCOS. Institutional Marginalization Underrepresentation in Research Institutional marginalization refers to the policies and practices embedded in institutions that, intentionally and unintentionally, produce inequalities in access to health care (Lynam & Cowley, 2007). Despite its prevalence and treatment costing the U.S. health care system at least $4 billion annually (Azziz, Marin, Hoq, Badamgarav, & Song, 2005), PCOS research remains underfunded by NIH compared with other disorders with similar degrees of morbidity, mortality, and impact on quality of life (Brakta et al., 2017). Lack of funding for PCOS research can be partly attributed to discordance between the mission of the funding institution and its understanding of PCOS (Brakta et al., 2017). For instance, Brakta et al. (2017) found that a majority of NIH funding for PCOS is provided by the National Institute of Child Health and Development (NICHD), and the funded research focuses on the reproductive aspects of PCOS. Although PCOS is a metabolic disorder as well, the metabolic aspects of PCOS are not areas of interest to NICHD. The metabolic aspects of PCOS fall within the scope of the missions of the National Heart, Lung, and Blood Institute and the National Institute of Diabetes and Digestive and Kidney Diseases, yet these institutions fund very little PCOS research. The NIH Evidence-based Methodology Workshop on Polycystic Ovary Syndrome, a report that reviews the state of research on PCOS and provides recommendations for future research, acknowledges that the condition’s name “is a distraction and an impediment to progress . . . [it] causes confusion and is a barrier to effective education of clinicians and communication with the public and research funders” (NIH ODP, 2012, p. 6). According to Brakta et al. (2017), researchers can become discouraged from pursuing PCOS research due to real or perceived lack of funding, potentially leading to a dearth of researchers pursuing research in this area. Currently, no large-scale, racially diverse epidemiological studies necessary to understand the prevalence, phenotypes, and morbidities associated with PCOS among diverse groups of women across the United States are being conducted (NIH ODP, 2012). For instance, items about PCOS are not collected in the country’s major surveillance systems monitored by the Centers for Disease Control and Prevention (CDC). In addition, the sample size of PCOS-related medical visits in the National Health Care Surveys is insufficient to make reliable national estimates of behavioral health services associated with PCOS. Data with small sample sizes are not reported in the National Healthcare Disparities Report and Healthy People 2020, which evaluate the country’s progress in addressing health and health care disparities (Klein, Proctor, Boudreault, & Turczyn, 2002; Moy, Arispe, Holmes, & Andrews, 2005). The lack of funding and research on PCOS creates barriers to understanding health and health care disparities with regard to PCOS. Lack of Culturally and Gender-Sensitive Standards of Care Australia was the first country to develop national guidelines to assess and manage the physical and mental health of adolescents and women with PCOS. These guidelines were developed in collaboration with advocacy groups, patients, and health care providers. They recognized the health disparities among women in Australia, the increased risk of PCOS among Aboriginal women—one of the most marginalized populations in Australia—due to higher rates of metabolic syndrome, and the social and economic barriers faced by them compared with nonindigenous Australian women (Jean Hailes for Women’s Health, 2015). The high rate of PCOS among Aboriginal women in Western Australia has been associated with cultural and lifestyle changes that resulted from white colonization (Davis et al., 2001). This is an example of systemic racism that led to the relocation of Aboriginal women to underresourced communities that lacked quality health care services. The Australian guidelines recognize the need to provide culturally appropriate care, services, and programs to meet the needs of diverse groups of women in the country. In the United States there is a paucity of research on the intersections of PCOS and race, gender, social class, and other social determinants of health, as most of the research on PCOS has focused on the condition itself. Lack of research on how women with different social identities experience PCOS hinders understanding of the social determinants of health, health disparities, and the development of culturally and gender-sensitive health care services for diverse groups of people with PCOS. Although obese Hispanic women are at an increased risk of PCOS (Sam, Scoccia, Yalamanchi, & Mazzone, 2015), little is known about the influence of their cultural beliefs and practices on their management of PCOS. For instance, parents’ cultural values play a role in Latinas’ access to sexual and reproductive health services, including contraceptives (Caal, Guzman, Berger, Ramos, & Golub, 2013). However, it is unknown how Latino parents influence their daughters’ use of oral contraceptives to manage PCOS symptoms such as menstrual irregularity. Further research in this area is necessary to understand parents’ concerns that use of oral contraceptives to manage PCOS may increase the likelihood of promiscuity or initiation of sexual activity by their daughters (Hillard, 2005). Such concerns can deter parental support for the use of oral contraceptives to manage PCOS and can also affect preventive interventions with Latino families. The experiences of lesbian, gay, bisexual, transgender, and queer (LGBTQ)-identified patients with PCOS are also underrepresented in the literature and are necessary to better understand the relationship between patient preferences and the management of PCOS. Females with PCOS tend to have higher levels of androgens or sex hormones, such as testosterone, compared with females without PCOS. High levels of androgens are associated with PCOS symptoms such as hirsutism, acne, and alopecia (Goodman et al., 2015). Research on lesbian women with PCOS compared the prevalence of PCOS between heterosexual and lesbian women. Studies conducted with women seen in infertility clinics in the United States did not find significant differences in the prevalence of PCOS, including differences in androgen levels, between heterosexual and lesbian women (Smith et al., 2011). Researchers and readers should interpret such research with caution, as research conducted on the differences in androgen levels between heterosexual and lesbian women might unintentionally pathologize lesbian women and perpetuate stereotypes that lesbians are “masculinized women” (Johnson, 1997). In-depth interviews with female-assigned-at-birth (FAAB) individuals between the ages of 18 and 44 found that interviewees identified PCOS as one of their most important reproductive health care concerns. They reported that heteronormativity in health care, such as the case where reproductive care is primarily associated with fertility and womanhood, can alienate FAAB individuals who are not at risk of pregnancy and do not plan on having children (Wingo, Ingraham, & Roberts, 2018). Furthermore, case studies suggest that the gender identity of transgender male adolescents influences their management of PCOS symptoms. For instance, some patients may be comfortable with hirsutism and absent menstrual periods, because these symptoms conform to their gender identity and expression (Guss & Pitts, 2018). Further research is necessary to understand the concerns of patients with PCOS who identify as LGBTQ, to provide gender-sensitive health care. Medical Rights and the Contraceptive Mandate In addition to lifestyle changes and, in some cases, medication such as Metformin to manage the metabolic syndrome, patients with PCOS are prescribed oral contraceptives to manage symptoms such as irregular, absent, prolonged, painful, or heavy periods. Use of contraceptives by patients with PCOS can also prevent risk of endometrial cancer. Over time, the endometrium of women who do not menstruate or have irregular menstrual periods thickens due to the blood and nutrients that are normally expelled during menstruation. This thickening of the endometrium increases the risk of endometrial cancer among women with PCOS (Dumesic & Lobo, 2013). One of the goals of the Patient Protection and Affordable Care Act (ACA) of 2010 was to shift the focus from reactive medical care to preventive care (Lupu, 2015). The ACA stipulated that insurers may not apply co-pays, coinsurance, or deductibles to preventive services, including contraception for women (Tschann & Soon, 2015), implying that contraceptive services would be free for women. The government argued that the mandate of no-cost coverage of contraceptives would support women’s reproductive health, gender equality in health costs, avoidance of unwanted pregnancies, and the need for at least some contraceptive medicines for the treatment of other conditions (Lupu, 2015). The contraceptive coverage mandate has been a highly divisive issue, with some arguing that it infringes on their religious freedom under the federal Religious Freedom Restoration Act (RFRA) of 1993 (Luchenitser, 2015). For instance, houses of worship such as churches and synagogues are completely exempt from providing coverage for contraceptives. Nonprofit institutions that have religious objections to providing some or all contraceptives can apply for an accommodation to the ACA contraceptive mandate. Similarly, closely held corporations, or for-profit employers with a small group of shareholders who assert religious objections to the contraceptive mandate, can apply for an accommodation as well (Tschann & Soon, 2015). In the 2014 case Burwell v. Hobby Lobby Stores, Inc., the Supreme Court declared that RFRA grants for-profit employers a right to impose their religious beliefs on their employees by refusing to provide health insurance coverage for the procedures and medications conflicting with the religious tenets of the employer (Luchenitser, 2015). Although RFRA is intended to prohibit the government from substantially burdening religious exercise, some legal analysts argue that instead of protecting religious freedom, RFRA allows religious believers to impose their faiths on others, such as their employees (Luchenitser, 2015). Health care policies that deny women access to no-cost birth control coverage based on religious objections inevitably deny women with PCOS their medical right to the medication they need to manage their symptoms. This is exacerbated by the public’s misconception that contraceptives, commonly referred to as “the pill,” are solely used to prevent pregnancy, even though birth control is a form of hormone therapy—a medication used to manage PCOS symptoms regardless of a woman’s sexual behavior. Therefore, access to no-cost contraceptive coverage for women with PCOS, particularly for those who are economically disadvantaged, is critical for the management of PCOS and prevention of endometrial cancer. Sociocultural Marginalization Women with PCOS are stigmatized and marginalized when their bodies do not conform to dominant social constructs of beauty, femininity, and womanhood. They consider themselves different from “normal” women, due to symptoms such as hirsutism, irregular and absent menstrual periods, and infertility (Snyder, 2006). These women often describe themselves as “hairy monsters,” “ugly,” “abnormal,” “different,” and “unwomanly,” and some women believe contraceptives produce “artificial” periods and “fake” femininity (Kitzinger & Willmott, 2002, pp. 352–356). In addition, they describe symptoms such as hirsutism as shameful and experience anxiety in sharing their diagnosis with others (Roessler, Glintborg, Ravn, Birkebaek, & Andersen, 2012). Women with PCOS are stigmatized and perceived as “the other,” when they are unable to achieve the smooth, menstruating, and fertile bodies that society mandates as the desirable body of a woman. Society perpetuates dominant social constructs of beauty, femininity, and womanhood that stigmatize women with PCOS for nonconformity. For instance, popular women’s magazines conflate health with beauty and femininity. Insofar as they represent PCOS at all, the magazines primarily portray the experience of white women with PCOS, overlooking the experiences of women of color with PCOS, and frame PCOS symptoms as problems that can be resolved with beauty products to achieve hairless, smooth bodies (Sanchez & Jones, 2016). As a result, women are likely to engage in practices such as shaving to hide facial hair growth, which has implications for their diagnosis. For instance, hair removal techniques that do not address the underlying causes of excessive hair growth can mask the severity of PCOS-related hirsutism (Keegan, Liao, & Boyle, 2003). Individual Marginalization When women with PCOS internalize or accept gender-based beliefs and labels such as “the other,” “ugly,” or “abnormal,” they are at risk of developing poor body image, eating disorders, isolation, anxiety, and depression. For instance, Cipkala-Gaffin, Talbott, Song, Bromberger, and Wilson (2012) found that women with PCOS had a higher prevalence of mild or moderate depressive symptoms (31 percent) compared with women without PCOS (17 percent). Among women with PCOS, those with higher body mass index, more children, and less education were at the greatest risk of developing mild to moderate depressive symptoms. In addition, patients from low-income backgrounds with a diagnosis of PCOS were more likely to have a diagnosis of anxiety and depression according to the state of Louisiana Medicaid claims (Sirmans, Parish, Blake, & Wang, 2014). Furthermore, women with comorbidity, that is, PCOS in addition to other health conditions, reported depressive symptoms, self-harm, and suicidal ideation (Williams et al., 2015). Implications for Social Work The NIH ODP (2012) noted a need to “establish multidisciplinary programs to improve public and healthcare provider awareness and management for women who currently have the syndrome” (p. 8). Thus, it is imperative for social workers to understand the need to integrate behavioral health in the treatment of PCOS. Readers seeking to familiarize themselves with current treatment guidelines and position statements regarding PCOS should read Androgen Excess-Polycystic Ovary Syndrome Society: Position Statement on Depression, Anxiety, Quality of Life, and Eating Disorders in Polycystic Ovary Syndrome by Dokras et al. (2018). This position statement recommends screening for depression, anxiety, and eating disorders at the time of the diagnosis. It also recommends further research on the impact of therapy on depression and anxiety, health-related quality of life, and eating disorders (Dokras et al., 2018). The International Evidence-Based Guideline for the Assessment and Management of Polycystic Ovary Syndrome 2018, published by Monash University, in Australia, is the first international set of guidelines developed in collaboration with 37 societies and 71 countries (Teede et al., 2018). Chapters 2 and 3 discuss the prevalence, screening, diagnostic assessment, and treatment of the emotional well-being and behavioral interventions of patients with PCOS. The position statement and guidelines are consistent with the U.S. Preventive Services Task Force recommendations that women and people with chronic illnesses be screened for depression (Siu & U.S. Preventive Services Task Force, 2016). They are also consistent with the CDC’s recommendations to integrate mental health promotion with chronic disease prevention (CDC, 2011). Social workers as part of multidisciplinary teams play an important role in treating patients with PCOS. The following case study by Scalzo and McKittrick (2000), written by a registered dietitian and certified diabetes educator, illustrates the role played by a social worker in the care of CR, a Hispanic adolescent with PCOS. CR was first referred to a social worker for binge-eating behavior she engaged in to fill “the empty hole” she felt. The social worker found that CR was experiencing symptoms of depression, dealing with bereavement, and performing poorly in school. CR disclosed concerns about her weight, feeling “like a man” because of her irregular periods, and suicidal ideation. CR was able to manage her symptoms and regain control of her mental health by meeting with the social worker regularly, attending appointments with her dietitian and gynecologist, and following the recommendations of her health care team. Conclusion In 2017, PCOS and women with PCOS gained national attention in the United States with the passage of House Resolution 495. This bill “recognizes the need for further research, improved treatment and care options, and a cure for PCOS” and “acknowledges the struggles affecting all women and girls afflicted with PCOS” (“Recognizing the Seriousness of Polycystic Ovary Syndrome (PCOS) and Expressing Support for the Designation of the Month of September 2017 as ‘PCOS Awareness Month,’” H.R. 495, 2017–2018, p. 1). This bill is a result of the collaboration among patients, providers, advocacy groups, and lawmakers and represents a major step in making the needs of individuals with PCOS a national priority. Greater funding for PCOS research, further research on the needs of diverse groups of patients with PCOS, and the integration of behavioral health with the treatment of patients with PCOS are necessary to address the needs of this marginalized population. Ninive Sanchez, PhD, is assistant professor, School of Social Work, University of Missouri, 712 Clark Hall, Columbia, MO 65211; e-mail: sanchezni@missouri.edu. References Azziz , R. , Marin , C. , Hoq , L. , Badamgarav , E. , & Song , P. ( 2005 ). Health care–related economic burden of the polycystic ovary syndrome during the reproductive life span . Journal of Clinical Endocrinology & Metabolism, 90 , 4650 – 4658 . Google Scholar Crossref Search ADS WorldCat Azziz , R. , Woods , K. S. , Reyna , R. , Key , T. J. , Knochenhauer , E. S. , & Yildiz , B. O. ( 2004 ). The prevalence and features of the polycystic ovary syndrome in an unselected population . Journal of Clinical Endocrinology & Metabolism, 89 , 2745 – 2749 . Google Scholar Crossref Search ADS WorldCat Brakta , S. , Lizneva , D. , Mykhalchenko , K. , Imam , A. , Walker , W. , Diamond , M. P. , & Azziz , R. ( 2017 ). Perspectives on polycystic ovary syndrome: Is polycystic ovary syndrome research underfunded? 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TI - Women with Polycystic Ovary Syndrome: A Marginalized Population in the United States
JF - Health & Social Work
DO - 10.1093/hsw/hlz033
DA - 2020-01-07
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VL - 45
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DP - DeepDyve
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