Cancer site
All
African American/Black
American Indian/Alaska Native
Asian/Pacific Islander
Hispanic
White
Breast
118.7
117.2
61.2
85.8
86.1
119.5
Cervical
7.5
9.8
6.3
6.3
9.6
7.2
Colon-Rectum (Women)
35.4
42.6
27.0
28.5
29.4
34.4
Colon-Rectum (Men)
46.2
56.9
32.1
38.5
41.7
45.2
Breast
21.9
30.2
11.4
11.7
14.3
21.3
Cervical
2.3
3.9
22
1.7
2.6
2.1
Colon-Rectum (Women)
13.0
17.6
9.7
9.8
9.4
12.6
Colon-Rectum (Men)
18.7
27.5
14.2
13.1
15.7
18.1
Cancer Disparities and LGBT Populations
In response to the clear and persistent trends the elimination of cancer-related health disparities among racial/ethnic minorities has been a national public health priority. For the first time Healthy People 2020, the nation’s roadmap for improving the health of US Americans, also includes sexual minorities as a priority. Although precise data on cancer rates among lesbians are lacking [4], evidence suggests that sexual minority status may contribute to excess risk for the development of certain types of cancers, including breast cancer [5, 6], anal cancer [7], lung cancer [8] and cancers associated with HIV/AIDS [9]. The causes of these disparities are complex and likely influenced by the same factors that drive cancer disparity rates among African American and other underserved populations. These factors include poor continuity of care [10]; socioeconomic factors, such as lack of adequate insurance coverage [11]; medical mistrust [12]; cultural and emotional factors [13]; and providers’ unintentional bias and inadequate cultural competency [14].
To date, few cancer-related studies have been conducted with LGBT people of color. Until additional research is available, clinicians, researchers, and policy makers must extrapolate from the extant literature on race/ethnicity and sexual minorities in general. However, an intersectional analysis would suggest that neither literature will adequately capture the experiences of LGBT people of color [15]. Due to exposure to multiple interlocking systems of oppression, sexual orientation likely exacerbates existing racial/ethnic disparities among LGBT people of color [15].
At this point it is important to note that similar to the population at large, LGBT individuals of color will come from multiple and diverse communities, each with their own cultural norms, attitudes, behaviors, and beliefs. However, the experiences of belonging to two distinct identity groups—one based on race/ethnicity and the other based on sexual orientation and/or gender identity—may create some commonalities linking members of diverse LGBT communities of color based on shared experiences of oppression and discrimination. That being said, this chapter will not be a comprehensive review of each of the primary racial/ethnic groups residing in the U.S. nor, due to lack of data, will it be an adequate review of any one racial/ethnic group. Instead the purpose of this chapter is to describe the extant literature on cancer-related disparities across the cancer continuum in LGBT populations. Where possible, an emphasis will be placed on highlighting the unique needs and concerns of LGBT of color, aiming to improve the experiences and outcomes associated with cancer in these diverse communities.
Cancer and LGBT Communities of Color
In the past two decades there has been a proliferation of research, services and political and social advocacy for sexual minority individuals. Despite these gains, knowledge about sexual minorities of color remains quite limited. The majority of studies on LGBT and cancer are hindered by low representation of non-Whites and few studies have large enough samples of people of color to permit reliable statistical analyses and meaningful results. Smaller-scale studies that rely on volunteer samples often include larger proportions of race/ethnic minority women, but even studies that purposefully target these groups are limited by relatively small subgroup sample sizes, particularly for groups other than African American and Latinos. At least part of the problem of recruitment of LGBT of color relates to historical distrust of research and White researchers in communities of color [16]. However, other factors likely include the lack of cultural competency of researchers [17], failure to utilize evidence-based and proven approaches to recruit and retain individuals of color [18], research protocols that include exclusion criteria that disproportionately impact participants of color [19], and the reluctance of some people to disclose a sexual- or gender-minority status [20], to name just a few challenges. Against this backdrop of limited empirical data, we provide an overview of the unique issues facing LGBT of color, and provide a discussion of general and unique risk factors across the cancer control continuum.
LGBT Research Across the Cancer Control Continuum
In 2009, the Institute of Medicine (IOM) published a comprehensive review of racial and ethnic disparities in health care [14]. In this report, a model was presented that posited health care disparities arise from a complex interplay of economic, social, and cultural factors (see Fig. 16.1). The model also emphasized that disparities can occur at multiple phases along the cancer control continuum. As seen in Fig. 16.1, the cancer control continuum includes cancer prevention, early detection, diagnosis and treatment, survivorship and end-of life care. In the following sections, we discuss each phase of the cancer control continuum and briefly review the available literature on LGBT populations, and information specific to LGBT of color were available.
Prevention
Behavioral and lifestyle factors have been identified as contributing to cancer disparities based on race/ethnicity [22]. In the general population, modifiable health risk behaviors with strong links to cancer include tobacco and alcohol use, level of physical activity, and body weight status [23]. Sexual minority individuals have numerous behavioral risks for cancer including high rates of obesity, high rates of alcohol and tobacco use; and among women, reproductive risk factors such as nulliparity; lower rates of birth control use, and older age of first birth [24–30]. The negative impact of these factors may be compounded by the combined influences of a sexual minority status and a racial minority status. For example, 78.2 % of African American women meet criteria for being overweight and 49.6 % for obesity, while 61.2 % of White women meet the criteria for being overweight and 33.0 % for obesity [31]. A more recent study [32], found that compared with heterosexual women of the same race/ethnicity, White and African American sexual minority women had an increased likelihood of being overweight and maintaining that overweight status overtime. However, sexual minority status was unrelated to weight among Latinas and inconsistently linked to weight among Asian women. Among men, sexual minority status was protective against unhealthy weight among all major racial/ethnic groups examined.
The lack of behavioral interventions aimed at reducing cancer risk behaviors among sexual minority populations is another important barrier to improving cancer outcomes. HIV and STI prevention studies represent the highest proportion of behavioral and health promotion intervention involving LGBT participants [33]. Studies associated with tobacco cessation are emerging in the literature [34–36]. However, the available literature points to a clear need for additional research aimed at increasing physical activity, smoking cessation, and diet and nutrition. Studies examining the comparative benefit of culturally tailored versus non-tailored interventions remain a priority as well as studies that are specifically focused on LGBT communities of color [37].
Detection and Diagnosis
Cancer screening behaviors may directly contribute to elevated risk for late-stage diagnosis and poor cancer outcomes. Primary among the target strategies for reducing cancer health disparities is increasing access to and participation in cancer screening by racial and ethnic minorities [38]. In the general population, racial/ethnic minorities are more likely to be diagnosed with more advanced stages of cancer compared to Whites [39]. Racial/ethnic minorities are also less likely to follow up on abnormal mammography results in a timely fashion, which leads to a decreased likelihood of being diagnosed at earlier stages of cancer formation [40]. Sexual minority women have also been identified as a population at risk for late-stage diagnosis of cancer [25]. Grindel et al. [41] found that among lesbians, rates of breast cancer screening in the past two years ranged from 58 to 84 %. Additionally, rates of cervical cancer screening continue to be lower than expected for women in the general population [42]. Charlton et al. [43] reported that compared to heterosexual women, sexual minority women (SMW) are significantly less likely to report past year and ever having cervical cancer screening. However, one review article found the literature to be mixed as to whether there are sexual orientation group disparities in mammographic screening [44]. In one of the few studies reporting on African American SMW, Ramsey et al. [45] found that 35 % of a sample of 1596 African American lesbians, age 18–70 years, reported they did not see a gynecologist regularly. Matthews et al. [42] reported on cancer risk and screening behaviors of African American SMW. Eighty-five percent of women over the age of forty reported ever having a mammogram and 69 % reported having been screened in the previous year. The majority of participants reported ever having a Pap test but reports of past year screening were low (68 %). A limitation of the two previous studies was the lack of a heterosexual comparison group. At least one study did not find differences based on sexual orientation in samples of women of color in having recent mammograms [46].
Despite consistent reports of lower screening rates, little is known about the factors contributing to the disparity. The research to date suggests that health care factors place SMW women at late stage detection and treatment of cancers including a lower likelihood of having medical insurance, poor access to health care services, the lack of culturally competent health care providers, and unmet medical needs [47]. Among heterosexual women, these factors have been directly related to lower screening rates. Although access to health care is a known barrier to cancer screening, Kerker et al. [48] found that SMW were less likely than heterosexual women to have had routine breast or cervical screening, even after controlling for health insurance coverage. One factor that may serve as a unique barrier to screening for SMW is homophobia and the lack of cultural competency of health care providers. Research suggests that SMW are less likely to engage in preventive health care [49]. This may be in part explained by communication barriers with health care providers arising from fears of homophobia or based on past negative experiences [48]. Perceived discrimination in health care settings has been associated with lower rates of cancer screening among SMW. Tracy et al. [50] found non-routine screeners were more likely to delay seeking healthcare and less likely to disclose sexual minority orientation to their primary care physician as a result of perceived discrimination. Further, health care providers frequently do not ask about sexual orientation or assume heterosexuality which also serves as a key barrier to appropriate health care [51].
Among gay and bisexual men, little is known about adherence to colorectal or prostate screening recommendations. However, more is known about anal cancers with research being conducted that examined knowledge and risk perception [52], studies examining uptake of anal cytology screening among HIV positive men who have sex with men (MSM) [53], barriers and facilitators to routine human papillomavirus (HPV) screening [54], and the psychological impact of anal cancer screening among HIV-infected MSM [55]. In a study examining uptake of HPV screening among MSM, D’Souza et al. [56] found that anal Pap screening was uncommon among a large sample of MSM with rates somewhat higher among HIV-infected MSM (10 % vs. 39 %). Most study participants expressed moderate or strong interest in screening (86 %) with high rates of uptake of screening when offered (85 %). Declining to have screening was associated with being African American suggesting a potential for HPV-related anal cancers among MSM secondary to lower rates of screening.
Treatment
Individual experiences within the health care system influence attitudes about receipt of health care services and potentially also the utilization of health care services [57, 58]. The quality of the patient-provider interaction is one important component of a patient’s experience within a health care setting [59]. Research suggests that health care providers who are more informative, give more explanations, show more sensitivity to the patient’s concerns, and offer more reassurance and support tend to have patients who are more satisfied with care, have a greater understanding of health issues, and are more committed to treatment recommendations [60]. Problems within the patient-provider relationship have been shown to contribute to a reduction in treatment seeking [61], engagement in health care [62], perceptions of the quality of health services received [63], as well as treatment satisfaction and emotional adjustment to illness [64]. The hypothesized mechanism for the relationship between patient-provider relationship variables and health outcomes is thought to stem from the links between positive patient-provider interactions which leads to patient satisfaction and adherence to recommended treatments [65].
In the general population, demographic characteristics have been shown to correlate with health and health care experiences. For example, Johnson et al. [66] conducted a study to examine the association between patient race/ethnicity and patient-physician communication during medical visits. The results showed that physicians behaved more verbally dominant and offered less patient-centered communication with African American patients than with White patients. Moreover, both African American patients and their physicians exhibited lower levels of positive affect than White patients and their physicians did [66]. Although racial disparities remain a significant concern, bias and discrimination in health care settings due to sexual minority status is well established [67, 68]. Other barriers for LGBT persons include physician ignorance regarding LGBT health risks and needs [69, 70], reduced access to preventive health services [71], lack of insurance coverage or access to partner benefits [72, 73] clinicians’ homophobia [74] and poor access to culturally competent, preventive, and ongoing health care services [47]. Combined, the above factors may act as formidable barriers to accessing high quality health care. However, the available literature suggests that while sexual minorities may have different preferences in cancer treatments (i.e., lower rates of breast reconstruction among lesbian breast cancer patients) [75], differences in overall quality of care have not been identified.
Post-Treatment QOL and Cancer Survivorship
Cancer treatments have advanced significantly in the past thirty years. Currently, about 65 % of all people with cancer can expect to live at least 5 years after their diagnosis. Nevertheless, cancer survival may be associated with short- and long-term physical and psychological morbidity secondary to the effects of cancer and related treatment. The Institute of Medicine (IOM) highlighted the importance of mental health services for cancer patients and survivors [76]. The IOM report noted that psychosocial problems are common and may include fear of cancer recurrence and death, anxiety and depression, feelings of alienation and isolation, problems with interpersonal relationships, and economic hardships related to cost of care, job loss, and employment and insurance discrimination. Given the rapidly increasing number of cancer survivors, more research looking at the impact that cancer diagnosis and treatment have on quality of life, and factors that affect the quality of cancer survivorship, is highly warranted.
Among sexual minority populations, the largest preponderance of research associated with cancer has focused on issues associated with the survivorship period and have primarily been conducted with sexual minority women with a history of breast cancer. These studies have included examinations of quality of life [75, 77], emotional adjustment [78, 79], sexual functioning [80], supportive needs and resources [81], and physical health symptoms and morbidity [82]. Results were mixed as to whether sexual orientation negatively impacts women’s experiences in the survivorship period with some studies suggesting differences in adjustment and response while other studies have found no differences. Inconsistencies in results are likely due to the range of issues addressed and the relatively small number of studies that exist. As in most other areas of cancer research involving LGBT individuals, the majority of studies examining the survivorship period were unable to compare outcomes based on race/ethnicity. Further research is needed to examine the survivorship needs and experiences of LGBT people of color especially as it relates to the availability of family specific emotional and tangible support.