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1 LGBT Health Volume 2, Number 2, 2015 ª Mary Ann Liebert, Inc. DOI: /lgbt SHORT REPORT Comparison of Lesbian and Bisexual Women to Heterosexual Women s Screening Prevalence for Breast, Cervical, and Colorectal Cancer in Missouri Jane A. McElroy, PhD, Jenna J. Wintemberg, MPH, and Amy Williams, MD Abstract Sexual minority women may be at higher risk of breast, cervical, and colorectal cancer compared to heterosexual women. In addition, sexual minority women may use preventive cancer-related screening services less than heterosexual women. Using a population-based probability sample of Missouri women, we compared cancer screening behavior of heterosexual (n = 29,847), self-identified lesbian (n = 114), and bisexual (n = 162) women. Sexual minority women were significantly younger by approximately 10 years and comprised less than 1% of the sample. In this sample, sexual minority and heterosexual women did not differ in the proportion having ever obtained breast, cervical or colorectal cancer screenings. Key words: cancer screening, female, heterosexual, sexual minority. Introduction To reduce the likelihood of developing a chronic health condition, such as cancer or heart disease, concentrated efforts are expended at the population level as well as at the individual level to promote healthy lifestyle choices, including but not limited to: maintaining a healthy weight; not smoking; limiting alcohol consumption; and compliance with recommended cancer screening. In the near future, cancer is projected to replace heart disease as the number one cause of death for all Americans, as it already is among U.S. Hispanic population. Consequently, the importance of cancer screening for prevention or early detection of the disease has become increasingly important. 1,2 The controversial question of timing and frequency of breast cancer screening with the release of the U.S. Preventive Services Task Force breast cancer screening recommendation of biennially starting at the age of 50, illustrates the importance of having clear guidelines that are strongly advocated by the medical community. 3 Two of the top three most common cancers faced by women, breast and colorectal, as well cervical cancer which is ranked 8 th, have well established screening guidelines. 4 Screening is vital as it is used to detect asymptomatic cancer or conditions that may lead to cancer. As a result of screening, cancer can be diagnosed and treated earlier, leading to more options for treatment and potentially better patient prognosis. Because the national cancer registry system does not currently collect data on patients sexual and gender minority (SGM) status, national data on cancer incidence or mortality rates by SGM status are unavailable. However, sexual minority females may be at greater cancer risk due to a higher likelihood of having some established risk factors. For example, numerous studies have compared sexual minority women to heterosexual women and reported higher prevalence of obesity, 5 smoking, 6 nulliparity, 7 and reduced access to health care. 8 Similarly studies have described the reasons for lower prevalence of screening behavior in sexual minority females as: lack of insurance 9 ; negative experiences or fear of discrimination at the doctor s office 10 ; lower utilization of routine preventive care 11 ; lack of physician knowledge about the need for cervical cancer screening, particularly for lesbians 12 ; perception of reduced risk for cervical cancer among sexual minority females 13 ; and lack of health promotion targeting sexual minority females. 14 It is believed that these risk factors and decreased cancer screening rates increase the risk of breast, cervical, and colorectal breast cancer in sexual minority females two- to three-fold. 14 The purpose of this study was to compare breast, cervical, and colorectal cancer screening prevalence between sexual minority and heterosexual females. The source of the data was a population-based probability sample of all Missouri counties that used a validated survey instrument to support generalizability of the findings to the state of Missouri. Methods The Missouri County-Level Study (CLS) used a probabilistic sampling design in order to produce prevalence Department of Family and Community Medicine, University of Missouri, Columbia, MO. 188

2 CANCER SCREENING IN LB AND HETERO FEMALES 189 estimates of chronic diseases and risk factors for Missouri counties. 15 The CLS questionnaire was constructed using core questions from the Center for Disease Control and Prevention s Behavioral Risk Factor Surveillance System (BRFSS). Missouri residents were interviewed via randomly-selected landline or cell phone telephone numbers from January through December Trained interviewers at the University of Missouri Health and Behavioral Risk Research Center conducted the interviews. The study protocol included specific information regarding how telephone numbers were selected, how and when call attempts were made, and participant eligibility and selection (for additional details see: 16 Eligibility criteria included adults, age 18 years or older with a residential telephone number (unlisted or listed), English speakers, and the non-institutionalized. Only one adult member of each household was eligible to be included in the survey. The questionnaire included 139 core questions, although some participants may have answered more or fewer question depending on their responses to the core questions and skip pattern logic. The time to complete the interview was, on average, 22 minutes. Sample sizes of 400 participants were obtained for 112 of the 114 Missouri counties. A sample of 800 participants each was obtained for the remaining two Missouri counties ( Jackson and St. Louis) and St. Louis City. This allowed for approximately equal numbers of respondents from the 1 3 Rural Urban Commuting Area (RUCA) areas, representing isolated rural areas, small towns of up to 10,000, and suburbs and towns of up to 49,999 people. Sexual orientation was determined by asking the question, Which of the following do you consider yourself to be? (Straight, gay or lesbian, bisexual, transgender, other/specify, don t know/not sure, refused). Females indicating a lesbian or bisexual orientation were considered sexual minorities. Descriptive statistics (frequencies, means and standard deviations) and Cochran-Mantel-Haenszel tests were used to examine age-adjusted differences between sexual minority women (lesbians and bisexuals separately) and heterosexual women on items related to socio-demographic variables (Table 1), access to healthcare and cancer risk factors (Table 2), and cancer screenings (Table 3). To correct for multiple comparisons, only differences detected at the P <.01 level were considered significant. Analyses were conducted using SAS 9.3 statistical software (SAS Institute, Inc., Cary, North Carolina). Results The 2011 County-Level Study dataset included 50,743 respondents. Men (n = 19,256), transgender individuals (n = 23), women missing sexual orientation data (n = 1,327) and women who indicated other for sexual orientation (n = 14) were removed, bringing the final dataset to 30,123 adult Missouri women. The sexual minority sample (n = 276; 0.92% of the full sample) included 114 lesbians (41.3%) and 162 bisexual women (58.7%). The oldest age category (65 + years) of sexual minority women differed significantly with heterosexual women (Lesbian [L]: 8.8%, Bisexual [Bi] 21.0% vs Heterosexual [H]: 40.5%). Fewer heterosexual women were in the lowest household income category ( < $25,000) compared to their lesbian counterparts (H: 33.0% vs L: 45.1%). Although the sample plan by design collected approximately the same number of participants for 1 3 Rural Urban Commuting Area (RUCA) areas, 17 e.g., 400 participants, the distribution of sexual minority women was not uniform. Significantly more self-identified sexual minority women resided in the most sparsely populated counties (approximately 33%) compared to the other two non-metropolitan areas (9% and 18%). The heterosexual and sexual minority samples had a similar racial composition, with most individuals identifying as white (L: 88.6%, Bi: 90.7% vs H: 92.8%). Among those identifying as a race other than white, the majority identified as black (H: 4.6%, L: 9.6%; Bi: 6.2%). Lesbians were more likely to report high educational attainment of college graduate or more (L: 39.5% vs Bi: 25.2%; H: 22.1%) (Table 1). Compared to heterosexuals, lesbian women but not bisexual women were significantly more likely to be current smokers (L: 32.7% vs H: 17.8%) and to have an obese ( 30 kg/m 2 ) body mass index (L: 43.0% vs H: 29.2%). In contrast, compared to heterosexuals, bisexual women but not lesbians were significantly more likely to be on Medicaid/MC + /Medical Assistance (Bi: 16.5% vs H: 5.4%), and to have needed medical care in the past 12 months but not have gotten it (Bi: 21.0% vs H: 7.4%) (Table 2). Sexual minority (lesbian and bisexual, separately) and heterosexual women did not differ in the proportion having ever received recommended cancer screenings, specifically: mammograms, Papanicolaou tests, fecal occult blood tests, or sigmoidoscopies/colonoscopies. In addition, lesbians or bisexuals compared to heterosexual women did not differ in the amount of time since receiving the previously listed cancer screenings (Table 3). We did not have a sufficient sample size of sexual minority women to explore screening prevalence for those without insurance. Discussion Our cancer screening findings did not concur with other studies that reported a lower proportion of sexual minority women receiving recommended screening compared to heterosexual females. 11 For example, a similarly designed significantly larger study that used Washington State Behavior Risk Factor Surveillance System (BRFSS) data collected from found that lesbian and bisexual women age 50 and older were significantly less likely to have had a mammogram. 18 When we analyzed those age 50 or older, our results continued to show a similar likelihood of breast cancer screening among lesbian, bisexual and heterosexual women in Missouri. In this Washington BRFSS study a much larger proportion of the sample self-identified as a sexual minority (n = 58,319 female respondents with 1.57% identified as lesbian or bisexual), compared to our study. Overall, Missourian women have done slightly better than the national average for breast cancer screening (national: 72.4%; CLS heterosexual: 76.6%; CLS lesbians: 80.6%; CLS bisexuals: 74.7%), much better for cervical cancer screening (national: 83.0%; CLS heterosexual: 96.7%; CLS lesbians: 98.9%; CLS bisexuals: 99.1%), and colorectal cancer screening (national: 58.8%; CLS heterosexual: 74.2%; CLS lesbians: 86.2%; CLS bisexuals: 83.0%). 19 Breast, cervical, and colorectal cancer incidence rates in the sexual minority population have been previously reported as elevated, the same, and lower compared to heterosexual females. 11,20,21 In each case, the study design and sampling frame were instrumental in shaping the conclusion and

3 190 MCELROY ET AL. Table 1. Cochran-Mantel-Haenszel Age-Controlled Comparisons of Heterosexual and Sexual Minority Women: Participant Demographics Age (in years) v 2 = v 2 = < v 2 = < v 2 = 3.61 < v 2 = < v 2 = <.0001 Household Income 1 < $15,000 $24, <.0001 $25,000 $49, $50,000 $74, $75, Missing Urban/Rural Status 1 1 (isolated rural areas) < (small towns: up to 10,000 people) (suburbs and towns: ,000-49,999 people) 4 (metropolitan area: < ,000 people) Ethnicity 1 Hispanic Race 1 White Non-White Education 1 Never attended, elementary only, some high school High school or GED Some college College graduate Employment Status 1 Employed for wages, self-employed Unemployed, homemaker, student Retired Unable to work Values in bold are statistically significant. none of the findings could reasonably be generalized to the U.S. adult population. In contrast, increased risk of cancer has been consistently reported due to sexual minority women having a few elevated known cancer risk factors. 11 Although this was a population-based, probability sample of Missouri adult residents, it is striking that we found a statistically significant difference in mean age between heterosexual (58.6, SD: 17.3 years) and sexual minority females (L: 47.0, SD: 13.8 years; B: 46.4, SD: 21.0 years), which implies that age is likely associated with the self-report of sexual minority status. Although we did not have any data to evaluate reasons for this difference, numerous studies have reported the phenomena of going back in the closet as one ages. 22 Responding to a telephone call in which a stranger asks personal questions requires a fundamental trust of being treated with respect if one disclosed a sexual minority identity, as well as trust that the information will not somehow become public knowledge. Many studies have reported perceived or real discrimination when sexual minority status is known, especially for older adults. 22 A ramification of this unexpected finding is concern about generalizability of findings for this hard to reach population and whether or not large studies using a convenience sample better reflect the characteristics of sexual minority women. Several limitations need to be considered in evaluating our results: One limitation was a substantial difference in mean age between the two groups with sexual minority women being over 10 years younger. Participants in the CLS study were white, highly-educated women which does not represent the general population in Missouri. Participants identifying as white were overrepresented in this study with 92.8% of heterosexual women and 89.3% of sexual minority

4 Table 2. Cochran-Mantel-Haenszel Age-Controlled Comparisons of Heterosexual and Sexual Minority Women: Healthcare Coverage and Cancer Risk Factors 1 Smoking Status Current Former Never < Body Mass Index (weight [lb]/height [in] 2 703) Underweight (below 18.5) Healthy weight ( ) Overweight ( ) Obese (30.0 and above) Eat more than 5 servings of fruits and vegetables per day Yes Participated in Physical Activity in the Past 30 days Yes Has Health Care Coverage Yes Type of Health Care Coverage (yes respondents only) Your employer, someone else s employer, a plan you or someone else buys on your own Medicare MC +, Medicaid, Medical Assistance Other source Needed Medical Care in Past 12 Months But Did Not Get It Yes <.0001 Values in bold are statistically significant. Table 3. Cochran-Mantel-Haenszel Age-Controlled Comparisons of Prevalence of Cancer Screenings Between Heterosexual and Sexual Minority Women 1 Ever Had a Mammogram (age 40 + ) Yes Time Since Last Mammogram (age 40 + ) Within the past 2 years More than 2 years ago Ever Had a Pap Test (for women who never had a hysterectomy) Yes Time Since Last Pap Test (for women who never had a hysterectomy) Within the past 2 years More than 2 years ago Ever Had a Blood Stool Test (age 50 + ) Yes Time Since Last Blood Stool Test (age 50 + ) Within the past year More than 1 years ago Ever Had a Sigmoidoscopy or Colonoscopy (age 50 + ) Yes Time Since Last Sigmoidoscopy or Colonoscopy (age 50 + ) Within the past 5 years More than 5 years ago

5 192 MCELROY ET AL. women compared to only 83.7% of the Missouri Population. 23 Reasons for underrepresentation by racial minority populations have been well characterized in the literature and include numerous sociocultural barriers, such as economic barriers (e.g., having access to a telephone), communication issues, and a distrust in medical research. 24 There is also risk of recall bias and response bias since this was a telephone survey about self-reported screenings. It is possible that participants may have inflated their reports of having received cancer screenings because answering affirmatively may be considered a socially desirable (SocD) response. In a review of health-related studies using a social desirability scale (n = 31), approximately 40% found SocD response influenced their results. 25 Including a SocD scale in surveys that contain socially sensitive questions would allow researchers to detect and control for this phenomena. However, whether or not there are differences between heterosexual and sexual minority women in recall or SocD responses has yet to be evaluated. These findings cannot be generalized to women of minority races, women who lack insurance or women of modest to low economic status. Finally, fewer sexual minority women (less than 1%) than expected for this type of study (e.g., 2%) 18 participated in the CLS, threatening external validity. In summary, our results showed a statistically similar proportion of sexual minority women screened for breast, cervical, or colorectal cancer compared to heterosexual women. Some caution needs to be given in interpreting our findings given the study limitations. Additional studies using larger nationally representative samples are needed to understand the cancer screening rates of sexual minority women. Determining the reasons for and addressing issues related to the age disparity in self-report of sexual minority status in Missouri females is warranted. Author Disclosure Statement No competing financial interests exist. References 1. American Cancer Society: Cancer Facts & Figures for Hispanics/Latinos, Available at cancer-factsfigures-hispanics-latinos.pdf (accessed March 25, 2015). 2. Arteaga CL, Adamson PC, Engelman JA, et al.: AACR Cancer Progress Report Clin Cancer Res 2014; 20(19 Suppl):S1 S Harris R, Kinsinger L: Screening mammography: The goal is changing. Am Fam Physician 2013;87: American Cancer Society: Cancer Facts & Figures Available at Statistics/CancerFactsFigures2014/index (accessed March 25, 2015). 5. Boehmer U, Bowen DJ, Bauer GR: Overweight and obesity in sexual-minority women: Evidence from population-based data. Am J Public Health 2007;97: McElroy JA, Everett KD, Zaniletti I: An examination of smoking behavior and opinions about smoke-free environments in a large sample of sexual and gender minority community members. Nicotine Tob Res 2011;13: Rankow EJ, Tessaro I: Mammography and risk factors for breast cancer in lesbian and bisexual women. Am J Health Behav 1998;22: Conron KJ, Mimiaga MJ, Landers SJ: A population-based study of sexual orientation identity and gender differences in adult health. Am J Public Health 2010;100: Mayer KH, Bradford JB, Makadon HJ, et al.: Sexual and gender minority health: What we know and what needs to be done. Am J Public Health 2008;98: Eliason MJ, Schope R: Does don t ask don t tell apply to health care? Lesbian, gay, and bisexual people s disclosure to health care providers. J Gay Lesbian Med Assoc 2001;5: Cochran SD, Mays VM, Bowen D, et al.: Cancer-related risk indicators and preventive screening behaviors among lesbians and bisexual women. Am J Public Health 2001;91: Marrazzo JM, Koutsky LA, Kiviat NB, et al.: Papanicolaou test screening and prevalence of genital human papillomavirus among women who have sex with women. Am J Public Health 2001;91: Price JH, Easton AN, Telljohann SK, Wallace PB: Perceptions of cervical cancer and Pap smear screening behavior by women s sexual orientation. J Community Health 1996;21: Phillips-Angeles E, Wolfe P, Myers R, et al.: Lesbian health matters: A pap test education campaign nearly thwarted by discrimination. Health Promot Pract 2004;5: Missouri Department of Health and Senior Services: Missouri County-level Study (CLS). Available at (accessed March 25, 2015). 16. Missouri Department of Health and Senior Services: Missouri county-level study (CLS). Available at (accessed March 25, 2015). 17. WWAMI Rural Health Research Center: Rural-Urban Commuting Areas (RUCAs) Maps. Available at (accessed March 25, 2015). 18. Fredriksen-Goldsen KI, Kim HJ, Barkan SE, et al.: Disparities in health-related quality of life: A comparison of lesbians and bisexual women. Am J Public Health 2010;100: Centers for Disease Control and Prevention: Cancer screening United States, MMWR 2012;61: Institute of Medicine (US) Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities: The health of lesbian, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington, D.C.: The National Academies Press, Boehmer U, Miao X, Ozonoff A: Cancer survivorship and sexual orientation. Cancer 2011;117: Cook-Daniels L: Lesbian, gay male, bisexual and transgendered elders: Elder abuse and neglect issues. J Elder Abuse Negl 1997;9: U.S.Census Bureau: Census Bureau Home Page. Available at (accessed March 25, 2015). 24. Shavers VL, Lynch CF, Burmeister LF: Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 2002;12: van de Mortel TF: Faking it: Social desirability response bias in selfreport research. Aus J Adv Nurs 2008;25: Address correspondence to: Jane A. McElroy, PhD Department of Family and Community Medicine University of Missouri MA306 Medical Science Building 7 Hospital Drive Columbia, MO mcelroyja@missouri.edu

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