Abstract
Purpose:
This study examined receipt of a well-woman visit (WWV) and cervical cancer screening (CCS) at the intersection of sexual orientation and race/ethnicity among Illinois women aged 21–65.
Methods:
This study used 2016, 2018, and 2020 Illinois Behavioral Risk Factor Surveillance System (BRFSS) data for women aged 21–65 to examine rates of CCS (n = 2848) and 2016–2018, 2020, and 2021 Illinois BRFSS data to examine WWV receipt (n = 5863) by sexual orientation (heterosexual vs. lesbian, gay, and bisexual [LGB]). Self-reported race/ethnicity was tested as an effect modifier to assess intersectionality. Using binomial regression, adjusted prevalence differences (aPD) and 95% confidence intervals (CIs) were estimated. Covariates included age, education, marital status, employment, and health insurance coverage.
Results:
Overall, 4.6% of Illinois women aged 21–65 self-identified as LGB. Heterosexual and LGB women had a similar prevalence of receipt of both a WWV (77.1% and 71.7%, respectively; aPD = 3.22, 95% CI: −3.62 to 10.06) and CCS (85.3% and 83.4%, respectively; aPD = 2.13, 95% CI: −4.77 to 9.04). Among non-Hispanic (NH) Black women, heterosexual compared with LGB women had a higher prevalence of receiving both types of care; however, adjusted associations included the null. Hispanic women had similar prevalence estimates by sexual orientation for both outcomes, and NH White heterosexual compared with LGB women had a higher prevalence of CCS, but not WWV.
Conclusion:
In Illinois overall, heterosexual and LGB women received preventive care at similar rates. However, when stratified by race/ethnicity, WWV and CCS receipt rates may be higher for heterosexual compared with LGB women, indicating potential missed opportunities for preventive care.
Introduction
The well-woman visit (WWV) is viewed by The American College of Obstetricians and Gynecologists (ACOG) as an opportunity for providers to counsel patients on their health status and risks, and to administer preventive care, such as vaccinations and screening for cervical cancer.1,2 Cervical cancer is one of the most frequent cancers among women, 3 yet largely preventable/treatable through adequate prevention and early detection. 4 Cervical cancer screening (CCS) has led to a decline in cervical cancer-related mortality5,6; however, suboptimal access to and utilization of prophylactic immunization, 7 preventive exams, 8 and follow-up visits after an atypical result 9 among racial and sexual minority populations may contribute to disparities in cervical cancer outcomes.7,10,11
Reports demonstrate that non-Hispanic (NH) Black women in the United States have higher rates of abnormal results and cervical cancer incidence and mortality than NH White women7,10–13 despite having higher rates of receipt of CCS 14 and the WWV. 15 Similarly, cervical cancer incidence is higher in Hispanic/Latina women compared with their NH White counterparts.13,16 These national racial/ethnic inequities in cervical cancer incidence and mortality are also observed in Illinois.17,18 Studies have also shown that women who identify as lesbian, gay, and bisexual (LGB) are more likely to delay care19–21 and less likely to receive preventive care compared with their heterosexual counterparts,8,22–24 which may also lead to inequities in cancer outcomes. 20
Moreover, racial/ethnic and sexual minority groups are disproportionately affected by socioeconomic barriers associated with inadequate access to and use of preventive care.25–31 Black and Latina women are historically insured at lower rates and more likely to have public insurance than NH White women. 27 Although health insurance coverage has improved among NH Black and Hispanic populations in the past decade, racial/ethnic differences persist. 26 This insurance coverage disparity is also observed for sexual minority women compared with heterosexual women.28,29 In general, individuals with Medicaid insurance or without insurance are more likely to be diagnosed with an advanced stage cancer compared with those with private insurance. 32
Additional barriers to receiving preventive care include patients’ negative beliefs and attitudes toward screening procedures 33 and negative experiences such as discrimination or inadequate patient–provider communication.31,34–36 Providers are sometimes unaware of the unique health needs of the LGBT community 36 and lesbian women may underestimate the need for CCS, 37 which may delay screenings. Further compounding the problem, Black women identifying as lesbian, bisexual, or queer reported experiencing discrimination during CCS in focus groups. 38 Unrelated to sexual orientation, another qualitative study of Black women found that participants held a mistrust of health care providers and overall care systems 31 ; this may be in response to a long U.S. history of devaluation of Black women’s bodies, particularly in the field of gynecology.39,40
Research focusing on the intersection of racial/ethnic and sexual identity is vastly underdeveloped. Limited studies report that women who identify as both racial minority and LGBT are disproportionately affected by barriers to care and additional adverse drivers of health.23,28,41,42 In addition, the United States has seen a steady increase in those identifying as LGBT, 43 meaning a growing number of individuals may be at elevated risk of not receiving preventive health care services. Recent advances in public health discourse have shifted focus to an intersectional framework for understanding health needs. 44 In particular, Black LGB women exist in a unique social position that must be understood separately from the two individual identities. In other words, understanding and exploring only one part of a group’s identity is not sufficient for explaining inequities in health outcomes. 45
To understand the intersection of sexual orientation and race/ethnicity with respect to preventive health care utilization in Illinois, this study assessed the relationship between receipt of preventive health services (i.e., WWV and CCS) among Illinois women aged 21–65 and: (1) sexual orientation, (2) race/ethnicity, and (3) the intersection of these two identities. Of note, the analysis presented here was aligned with a larger Illinois cancer control effort to investigate barriers to publicly funded breast and CCS programs in Illinois, with a specific focus on health equity and disparities, including among lesbian, gay, bisexual, transgender, and queer communities. 17 By examining both racial and sexual orientation simultaneously, this study adds an understanding of how the intersection of identities may influence preventive health care utilization above and beyond the consideration of only one identity at a time.
Methods
Data source and sample
Data for this analysis were derived from the 2016–2018 and 2020–2021 Illinois Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is a nationwide, random-digit dialing telephone survey of noninstitutionalized adults focused on health-related behaviors, including use of preventive care. 46 In Illinois, the survey is administrated by the Illinois Department of Public Health, in cooperation with the Centers for Disease Control and Prevention. 47
The BRFSS includes a set of core component questions administered by all states that administer the survey; states can add additional questions of their choosing. 47 The Demographic and Health Care Access modules, which includes preventive visit information, are included in the core survey each year. The Breast and Cervical Cancer Screening module is only included in the core survey during even years. An optional Sexual Orientation and Gender Identity module was introduced in 2014, and Illinois opted to include the module each year starting in 2015, except for in 2019. 47
This cross-sectional study examined the association between both sexual orientation and race/ethnicity, and the intersection of these two identities, with the receipt of preventive health services among Illinois women aged 21–65. Inclusion criteria included being an Illinois resident, female sex, ages 21–65, and self-reported race/ethnicity of NH White, NH Black, or Hispanic; other races were excluded due to low sample sizes. In addition, the sample was restricted to respondents with non-missing data for sexual orientation and the two focal outcomes: receipt of a WWV or CCS. Individuals with a history of hysterectomy were excluded for analyses of CCS. As BRFSS data are publicly available and de-identified, this study did not qualify as human subjects research and did not require Institutional Review Board approval.
Key variables
The study’s dependent variables were receipt of two key preventive health services: WWV in the past 12 months and up-to-date CCS. To examine rates of WWV receipt, 2016–2018 and 2020–2021 Illinois BRFSS data were used (n = 5863). A WWV is not necessarily a visit to a gynecologist; in fact, WWVs can be provided by any primary care provider. 2 In the BRFSS survey, respondents were asked “About how long has it been since you last saw a doctor for a routine checkup?” Those who responded, “Within the past year” were coded “Yes” for the WWV outcome. Responses of “Within the past 2 years (1 year, but less than 2 years ago)”, “Within the past 5 years (2 years but less than 5 years ago)”, “5 or more years ago”, and “Never” were coded “No.” “Don’t know/Not sure” and “Refused” were set to missing.
To examine rates of CCS, 2016, 2018, and 2020 data from the Illinois BRFSS were used (n = 2848). The United States Preventive Services Taskforce (USPSTF) recommends cervical cancer screening every 3 years with pap smear alone in women ages 21–29; for women ages 30–65, the USPSTF recommends screening every 3 years with only cervical cytology (also known as the pap test), every 5 years with only high-risk human papillomavirus (HPV) testing, or every 5 years with both high-risk HPV testing and a pap test. 48 To create a dichotomous variable for being up-to-date with CCS, age and other variables were combined, including whether the respondent ever had a pap test, ever had an HPV test, and the time since these last tests.
A main independent variable of interest was self-reported sexual orientation: heterosexual or LGB. Respondents were asked, “Which of the following best represents how you think of yourself?” Responses of “Lesbian or gay” and “Bisexual” were combined for analysis; although these populations do have distinct experiences, they were combined to increase sample size and to more effectively compare this population with their heterosexual counterparts. Responses of “Straight, that is, not gay” were labeled heterosexual. Responses of “Something else,” “I don’t know the answer,” and “Refused” were set to missing.
Self-reported race/ethnicity was also examined as an independent variable and as an effect modifier of the association between sexual orientation and preventive services receipt. This allowed for an assessment of the role of intersectionality between sexual orientation and race/ethnicity in preventive care receipt. Self-reported race and ethnicity items were combined to make three race/ethnicity categories. Those that reported “Yes” to the question “Are you Hispanic, Latino/a, or Spanish origin?” were categorized as “Hispanic” regardless of race. Those that reported “No” to this question were categorized as NH Black if they reported their race was “Black or African American” only, and NH White if they reported their race was “White” only.
Covariates included age (“What is your age?” categorized as 21–34, 35–44, 45–54, 55–65 years old), education level (“What is the highest grade or year of school you completed?” categorized as less than high school, high school degree or general educational development, more than high school), marital status (“Are you married, divorced, widowed, separated, never married, or a member of an unmarried couple?” categorized as married, unmarried), employment status (“Are you currently employed for wages, self-employed, out of work for 1 year or more, out of work for less than 1 year, a homemaker, a student, retired, or unable to work?” categorized as employed/self-employed, out of work/unable to work, homemaker, student, retired), and health insurance coverage (“Do you have any kind of health care coverage, including health insurance, prepaid plans such as Health Maintenance Organizations, or government plans such as Medicare, or Indian Health Service?” categorized as yes, no).
Statistical analyses
BRFSS is a complex sample survey; the data were weighted using survey weights to produce estimates representative of women in Illinois. Frequency distributions and weighted percentages were generated for all variables overall and by sexual orientation. Chi-square tests were used to assess for significant differences in the distribution of characteristics across the two sexual orientation groups.
Binomial regression models were generated to assess the relationships between sexual orientation and receipt of CCS and the WWV, as well as the relationships between race/ethnicity and receipt of CCS and the WWV; crude prevalence differences (PD) and 95% confidence intervals (CIs) were estimated. Adjusted prevalence differences (aPDs) and 95% CIs for these relationships were estimated from multivariable binomial regression models, including all covariates.
Finally, race/ethnicity was examined as a potential effect modifier to assess the role of the intersection between the two identities of race/ethnicity and LGB status, and receipt of CCS and the WWV. Effect modification was assessed by adding interaction terms for race/ethnicity by sexual orientation to each unadjusted and adjusted binomial regression model and calculating race/ethnicity-stratified PDs/aPDs and 95% CIs from the parameter estimates.
All analyses were completed using specialized procedures in SAS 9.4 (SAS Institute, Cary, NC) and Stata/BE 17.0 (StataCorp LLC, College Station, TX) to account for the complex survey design of the BRFSS.
Results
During the study years, 4.6% of Illinois women aged 21–65 self-identified as LGB (Table 1). Most women self-identified as NH White (66.1%), followed by Hispanic (17.6%) and NH Black (16.4%). The majority had more than a high school degree (66.2%), were married (53.8%), employed (63.9%), and had health insurance coverage (91.3%).
Descriptive Statistics for Illinois Women Aged 21–65, Overall and by Sexual Orientation, Illinois Behavioral Risk Factor Surveillance System 2016–2018, 2020–2021
Chi-square test for differences in the distribution of characteristics by sexual orientation.
Missing less than 1% of data for each of the following covariates: age, education, employment, and health insurance coverage.
CI, confidence interval; GED, general educational development.
Overall, 76.9% of Illinois women reported having a WWV in the past 12 months and 85.2% reported up-to-date CCS (Table 1). Heterosexual and LGB women had a similar prevalence of receipt of both a WWV (77.1% and 71.7%, respectively; aPD = 3.22, 95% CI: −3.62 to 10.06) and CCS (85.3% and 83.4%, respectively; aPD = 2.13, 95% CI: −4.77 to 9.04), after adjusting for age, education, health insurance coverage, marital status, employment status, and race/ethnicity (Table 2).
Association of Receipt of Preventive Health Services with Sexual Orientation, Race/Ethnicity, and the Intersection of Sexual Orientation and Race/Ethnicity Among Women Aged 21–65, Illinois Behavioral Risk Factor Surveillance System 2016–2018, 2020–2021
Excludes those with a hysterectomy.
Adjusted for age, education, health insurance coverage, marital status, and employment status. Listwise deletion was used for missing data.
aPD also includes race/ethnicity.
aPD also includes sexual orientation.
aPD, adjusted prevalence difference; cPD, crude prevalence difference.
When examining racial/ethnic differences in receipt of preventive care services (Table 2), NH Black women had a higher prevalence of WWV receipt (85.8%) compared with their NH White and Hispanic counterparts (75.2% and 74.9%, respectively). Adjusted PDs demonstrate that, compared with NH White women, NH Black and Hispanic women had a higher prevalence of WWV receipt in the past 12 months (aPD = 10.99, 95% CI: 8.07 to 13.92; aPD = 6.54, 95% CI: 2.40 to 10.69, respectively), after adjusting for age, education, health insurance coverage, marital status, employment status, and sexual orientation. The prevalence of CCS receipt was similar across the racial/ethnic groups; however, in adjusted models, NH Black women were more likely to report up-to-date CCS compared with NH White women (88.2% and 85.0%, respectively; aPD = 4.86, 95% CI: 1.91 to 7.81), after adjusting for covariates.
In models considering the role of intersection of these two identities in receipt of preventive care, the interaction between sexual orientation and race/ethnicity did not reach statistical significance in any of the crude or adjusted models for either outcome (Table 2). The only significant finding was for receiving CCS among NH White women; those identifying as heterosexual compared to LGB had a higher prevalence of CCS (aPD = 3.34, 95% CI: 0.94 to 5.74), but estimates for WWV receipt did not differ by sexual orientation for NH White women. Among NH Black women, those identifying as heterosexual compared with LGB had an elevated prevalence of receiving both a WWV (86.5% and 72.7%, respectively; aPD = 10.19, 95% CI: −5.57 to 25.96) and CCS (88.6% and 78.4%, respectively; aPD = 7.88, 95% CI: −11.68 to 27.43), though 95% CIs for both estimates included the null. Among Hispanic women, those identifying as heterosexual and LGB had similar prevalence estimates for both outcomes.
Discussion
The current study explored the relationships between both sexual orientation and race/ethnicity and preventive health care utilization. To assess intersectionality, race/ethnicity was tested as an effect modifier of the relationships between sexual orientation and receipt of a WWV and CCS. Overall, in 2016–2018 and 2020–2021, almost 5% of Illinois women aged 21–65 identified as LGB. Of interest, in Illinois, heterosexual and LGB women self-reported that they received preventive care services at similar rates to each other. This finding differs from prior literature stating that sexual minority individuals are less likely to receive preventive care compared to those identifying as heterosexual.8,22 This could speak to the political climate of Illinois, which is among the states with the highest number of policies that protect and strive for equality for the LGBT population. 49 Illinois is among the approximately 20% of states that have specific community health centers (CHCs) focused on meeting the health needs of the LGBT community. 50 Although most of these CHCs are centered in the Chicagoland area, at least one CHC is geographically accessible to all persons in Illinois. 50
When examining adjusted results for receipt of a WWV and CCS by race/ethnicity, NH Black women had a higher prevalence of both types of care, and Hispanic women had a higher prevalence of WWV receipt than their NH White counterparts. However, the highest cervical cancer incidence and mortality rates are among Black and Hispanic women in Illinois, 17 which indicates that receipt of preventive care is only one piece of the puzzle in Illinois’ racial/ethnic cervical cancer disparities. Receipt of preventive care does not capture the content or quality of that care, or if follow-up care was received when needed.
Assessment of effect modification by race/ethnicity of the relationships between sexual orientation and preventive care utilization resulted in some meaningful differences across racial/ethnic groups; however, most interaction terms and race/ethnicity-stratified adjusted associations were not significant. This finding could reflect the small sample sizes of women identifying as both racial/ethnic and sexual minority; significant differences may be evident with an increased sample size, as was observed among NH White women for receipt of CCS. Although 95% CIs included the null value, the magnitude of adjusted prevalence differences suggest that the prevalence of WWV and CCS receipt may differ between NH Black heterosexual and LGB women.
This study has important health equity implications related to ensuring access to care for the LGB population, as evident in the significant CCS finding for NH White women and the nonsignificant but suggestive results for Black LGB women, who experience minority status with respect to both sexual orientation and race. ACOG indicates that the WWV offers an important opportunity for women to receive CCS for early detection. 1 Reasons why some Black LGB women do not receive these preventive services may be fear of discrimination within the health care system and previous negative encounters with providers.31,38 Other reasons could be women’s low perceived risk of cervical cancer from a lack of knowledge of screening guidelines and the benefits 37 or providers not highlighting the need for screening. 36 Importantly, these findings are not intended to blame this population for a lower uptake in preventive care services; instead, findings emphasize the need for a system overhaul to provide more comprehensive, compassionate, and tailored care and education to all individuals.
As such, increasing women’s access to health information about the importance of the WWV and about cancer screening, and tailoring messages to meet the health needs of racial/sexual minority populations is necessary to improve early detection, as well as to emphasize the importance of follow-up visits after an abnormal test result. Healthcare providers may benefit from specialized training focused on the health needs of LGB individuals and how these needs intersect with their race/ethnicity, with potential to improve outcomes for both patients and providers by identifying specific barriers these individuals face. This will become a more pressing need with a growing population that would benefit from these services in the coming years. 43 These data also support the need for cancer screening surveillance data that better capture the health service utilization of racial/ethnic and sexual minority individuals and do not confine individuals to only one identity.17,40,44,45
Strengths and limitations
BRFSS is a well-known, validated survey that is commonly used to evaluate population-level health behaviors among U.S. adults. Importantly, this study is one of the first of its kind; using BRFSS, this study was able to generate population estimates for two types of preventive care outcomes and to examine the role of race/ethnicity, sexual orientation, and the intersection between the two in relationship to the receipt of preventive care. In addition, the questions related to race and ethnicity allowed the current study to separate those identifying as Hispanic from NH White and NH Black individuals as each group may have unique experiences; some prior literature did not specify the separation or inclusion of Hispanic identity.31,38
Despite its strengths, the study also has limitations. First, BRFSS data are self-reported, meaning that prevalence estimates may be affected by recall limitations or misidentification of visit types. With respect to the WWV outcome in particular, use of only “doctor” in the survey question may have led to an underestimated prevalence estimate if women who saw a nurse practitioner, physician’s assistant, or nurse midwife for preventive care did not respond in the affirmative. In addition, some respondents may have responded in the affirmative if they had visited a provider for a particular health concern and not only for a routine checkup. Health status was not included in the analysis because all women, regardless of health status, are recommended to have an annual WWV.1,2 Measurement issues may have also affected the CCS outcome if women misremembered the timing of their last screening or did not realize that an HPV test had been performed.
Second, although using one state’s data provides an informative picture of preventive care utilization for the state, due to the small sample size of women who identify as both LGB and racial/ethnic minority, some estimates were unstable, and the results should be interpreted with caution. Additional years were unable to be added to the analysis; in 2022, the questions related to CCS were changed, making the estimates incompatible with those of prior years. Future studies should consider a multistate analysis with a larger sample size to increase the power of the statistical analyses and examine additional racial/ethnic identities.
Another limitation is that the dataset does not contain information on follow-up visits after an abnormal test result, or the quality of care provided; future studies, possibly using electronic medical records, should consider the role of follow-up visits after screening when seeking to understand the reasons for sexual orientation and racial/ethnic disparities in cervical cancer morbidity and mortality. Further, the number of transgender individuals was too small to include in the analysis; future studies should consider gender identity (e.g., cisgender or transgender) as well as sexual orientation. In addition, future studies should separate bisexual individuals from those identifying as lesbian or gay, as the needs and preventive care barriers of these individuals may differ.
Conclusion
Compared to investigating each factor independently, examining the intersection of race/ethnicity and sexual orientation with respect to preventive health care utilization tells a more complete story of the care this growing population group is reporting to have received. 40 The results of this study suggest that when stratified by race/ethnicity, WWV and CCS receipt rates may be higher for heterosexual compared with LGB women, indicating there may be missed opportunities to receive preventive care. The consequences of these missed opportunities may be an increased risk of poor health outcomes from delays in detection. Moving forward, providers and the larger health care system should consider how to more effectively reach minoritized populations with both educational messaging and access to WWV and CCS. As part of this effort, it is essential that the multiple identities of all individuals be recognized.
Authors’ Contributions
C.M.M.: Methodology (supporting), formal analysis (lead), writing—original draft (lead), writing—review and editing. K.R.: Methodology (lead), writing—original draft (supporting), writing—review and editing, supervision (equal). A.H.: Conceptualization (equal), methodology (supporting), writing—original draft (supporting), writing—review and editing, supervision (equal). W.B.: Formal analysis (supporting), writing—original draft (supporting), writing—review and editing. M.L.: Formal analysis (supporting), writing—original draft (supporting), writing—review and editing. B.F.: Conceptualization (equal), methodology (supporting), writing—review and editing.
Footnotes
Acknowledgments
The authors acknowledge the support of the Illinois Department of Public Health (IDPH)’s Behavioral Risk Factor Surveillance System (BRFSS) program and their CDC partners for collecting the data used in this analysis, the IDPH Illinois Breast and Cervical Cancer Program for partial financial support of this project, and the BRFSS survey respondents.
Author Disclosure Statement
The authors have no competing interests to disclose.
Funding Information
The IDPH Illinois Breast and Cervical Cancer Program provided partial financial support for this project. UIC Interagency Agreement with IDPH: Work Order No. 56100002M.
Disclaimer
The findings and conclusions in this article are those of the author(s) and do not necessarily represent the official position of the Illinois Department of Public Health.
