Cancer Disparities Among Sexual and Gender Minority Populations

1. INTRODUCTION

There is limited research on sexual and gender minority (SGM) populations and cancer largely due to the lack of sexual orientation and gender identity (SOGI) data collection as national cancer registries do not currently collect SOGI data. SGM populations encounter significant barriers to care, including a lack of culturally competent providers.^1,2 Cancer screening rates among SGM populations overall are often low and significant gaps in screening recommendations exist for these populations.^3,4 Lack of culturally competent care and screening guidelines can lead to delays in cancer diagnosis and treatment resulting in decreased survival and quality of life.⁵ To better assess and address disparities encountered by SGM populations in cancer care, enhanced data collection is vital. Current challenges in data collection relate largely to the lack of standardization of measures for sex assigned at birth, sexual orientation, and gender identity, as well as the exclusion of these measures in cancer research. The Sexual & Gender Minority Research Office (SGMRO) at the National Institutes of Health (NIH) is working to help address these gaps, including by funding a National Academies of Science, Engineering, and Medicine (NASEM) Consensus Study Panel on SGM-related data collection.

2. CANCER DISPARITIES AMONG SGM POPULATIONS

Existing evidence suggest that the incidence of certain cancers may be higher among SGM populations. Breast cancer risk may be higher among sexual minority women (SMW) compared to heterosexual women due to a higher likelihood of nulliparity.⁶ Smoking and alcohol use are well-established risk factors for a number of cancers including lung, colorectal, and female breast cancers.^7,8 Smoking is more common among sexual minority men and women compared to their heterosexual peers, and SMW are more likely to drink alcohol than heterosexual women.^9-16 SMW are also more likely to be overweight or obese than their heterosexual counterparts, increasing their risk of breast, colorectal, liver, ovary, and pancreatic cancers.^12,17-20

Gay, bisexual, and other men who have sex with men (MSM) are more likely to report having prostate and colorectal cancers compared to heterosexual men, but less likely to undergo screening for these cancers.^21,22 Anal cancer risk is highest among MSM who have a higher prevalence of high-risk anal human papilloma virus (HPV) than their heterosexual counterparts.^23,24 Among human immunodeficiency virus (HIV)-negative men, MSM are 20 times more likely to have anal cancer.²⁵ HIV-positive MSM are up to 40 times more likely to have anal cancer than other men due to HPV infection and immunosuppression.^25,26 MSM living with HIV remain at higher risk of acquired immunodeficiency syndrome (AIDS)-defining cancers such as Kaposi sarcoma and non-Hodgkin’s lymphoma (NHL).²⁷ Further, HIV infection is associated with an increased risk of cancer-specific mortality.^28-30

Until recently, research on cancer among gender minority persons has been limited to case reports due to the dearth of available data.^2,31,32 Recent large-scale studies on breast cancer risk among transgender women with a history of gender affirming hormone therapy use have been mixed.^33,34 Although an analysis in the Veterans Affairs health database found no increased risk of breast cancer, a Dutch study found that transgender women had a higher incidence of breast cancer and were diagnosed at earlier ages compared to cisgender men.^33,34 Conversely, the use of estrogen and androgen inhibitors among transgender women has been associated with a much lower risk of prostate cancer.^35,36 Among transgender people with cancer, outcomes may be worse for these patients than cisgender adults due to barriers to care and lack of transgender-specific screening guidelines.² Jackson et al. reported that transgender adults were more likely to be diagnosed with lung cancer at later stages, less likely to receive treatment for pancreatic and kidney cancers, and at increased risk of death for prostate cancer, NHL, and bladder cancer.³⁷

3. BARRIERS TO CANCER CARE AMONG SGM POPULATIONS

Cancer screening may be lower among SGM individuals due to barriers to care.⁵ Lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) persons are more likely to live in poverty and less likely to be insured than heterosexual and cisgender individuals.^5,38-40 At the provider level, many clinicians are unaware of the unique health needs of SGM individuals.^41,42 This lack of awareness or cultural competence among clinicians may also lead to missed opportunities for cancer screening. For instance, clinicians may fail to recommend screening when patients’ gender changes in the medical record (e.g., prostate exams for transwomen) or erroneously believe that the risk is lower due to assumptions about sexual behavior (e.g., failing to recommend HPV testing for SMW).^5,43,44 SGM individuals may delay seeking care due to fears of discrimination, stigma, and microaggressions by clinicians.^5,40 Results from the National Transgender Discrimination Survey found that 28% of transgender patients reported harassment and violence in medical settings and 19% were refused care due to their gender identities.¹ Fear of discrimination has resulted in lower rates of cervical cancer screening among SMW and transgender men.^45-47 Mistreatment by providers is higher among SGM people of color and fears of negative interactions have been linked to lower breast cancer screening rates among Black SMW.^1,5,40,48,49

SGM patients with cancer are deeply affected by providers’ lack of LGBTQI-specific knowledge and skills, assumptions, and mistreatment.⁵⁰ In a national survey of oncologists, most providers indicated they do not feel confident in their knowledge of SGM-specific health needs; however, there was a high degree of willingness to learn.⁵¹ Although these oncologists recognized the importance of knowing a patient’s gender identity, only 40% thought knowing a patient’s sexual orientation was important.⁵¹ Moreover, most cancer institutions do not include questions pertaining to SOGI on intake forms.⁵¹ However, most patients want to disclose their SOGI to their providers.⁵² SOGI disclosure is related to more positive health outcomes and patients feel they receive better care when their support networks consist of same sex partners and friends from SGM communities are included.^50,52,53 SGM patients with cancer feel SOGI disclosure is especially important to discuss how cancer treatments may affect them personally and sexually.⁵⁴ Furthermore, disclosure may help providers avoid heterosexist and cisnormative assumptions and recognize the importance of partners in decision-making.^50,54,55

4. CHALLENGES IN SOGI DATA COLLECTION

Despite patients’ willingness to provide SOGI data, there are numerous challenges to data collection that limit our ability to adequately assess and address SGM-specific cancer disparities in both research and clinical settings. Many surveys, intake forms, and electronic health records conflate sex, sexual orientation, and gender identity, use binary sex and gender construction, do not incorporate gender neutral language, and lack “other” options in SOGI response categories.^56,57 Such collection forms often fail to acknowledge that sexual orientation and gender identity can change over time.⁵⁶ Moreover, the lack of standardization in SOGI measures across different institutions and data collection modalities (e.g., national surveys compared to cohort studies) hinders the ability to adequately compare results or pool data across studies.⁵⁶ Expanding, improving, and standardizing the use of sex, sexual orientation, and gender identity measures in research is necessary to develop models of care and interventions that account for the unique cancer experiences of SGM individuals.

5. ADDRESSING SGM DATA COLLECTION NEEDS AT NIH

SGMRO at the NIH is responsible for the advancement and coordination of SGM health research and related initiatives with the numerous institutes, centers, and offices across the agency. The office serves as a resource for intramural and extramural communities regarding SGM-related research activities, convenes scientific workshops to inform priority setting and identify research opportunities, enhances the dissemination of SGM-related health research, and leverages resources to develop initiatives that support this growing field of inquiry and its scientific workforce. SGMRO is also responsible for the development and implementation of the NIH FY Fiscal Year 2021–2025 Strategic Plan to Advance Research on the Health and Well-being of Sexual and Gender Minorities,⁵⁸ The plan serves as a blueprint for the agency and includes scientific opportunities, goals, and activities that seek to advance SGM health research and the overall well-being of SGM populations.⁵⁸ The plan outlines 4 key operational goal areas: advance rigorous research on the health of SGM populations in both the extramural and intramural research communities; expand SGM health research by fostering partnerships and collaborations with a strategic array of internal and external stakeholders; foster a highly skilled and diverse workforce in SGM health research; and encourage data collection related to SGM populations in research and the biomedical research workforce.⁵⁸

To help address these goal areas, the SGMRO contributed to a National Academies of Sciences, Engineering, and Medicine (NASEM) Consensus Study Report on LGBTQI+ Populations, released in 2020. The report reviews available evidence and identifies future research needs related to the well-being of sexual and gender diverse populations across the life course.⁵⁹ The panel recommended the addition of SOGI measures to all data collection efforts and instruments, and highlighted the need for methodological research to develop, improve, and expand measures that capture the full breadth of sexual and gender diversity.² Given the significant challenges that continue to persist in data collection and the panel recommendation, SGMRO funded a NASEM 2022 consensus study report titled Measuring Sex, Gender Identity, and Sexual Orientation. This report provides recommendations for specific measures and include guidance for the use of these measures across 3 domains: surveillance and research (e.g., large federal surveys), administrative data collection (e.g., workplace surveys), and clinical settings (e.g., clinical trials and patient intake forms).

Several NIH efforts currently include SOGI data collection in research studies and national surveys. The All of Us Research Program, the PhenX Toolkit, and the 2020 National Cancer Institute’s Health Information National Trends Survey ask sex assigned at birth separately from gender identity and sexual orientation in the demographics protocol.^60-62 The Adolescent Brain Cognitive Development Study asks sex assigned at birth, sexual orientation, and gender identity.⁶³ Current recommendations for SOGI data collection in clinical settings include intake forms that allow patients to self-report SOGI during registration, either remotely prior to the visit or on-site. These questions should be grouped with other demographic questions to normalize the process. Space should also be provided for clinicians to discuss SOGI during a visit if the patient did not provide this information during intake. Recommendations also include that all clinical staff should be trained to communicate effectively and respectfully with patients about the reasons for collecting SOGI data and how data will be used.⁶⁴

CONCLUSIONS

More data are needed to better assess and resolve SGM cancer disparities. SOGI data collection must occur in national cancer registries, national surveys, research studies, and intake forms in electronic medical records. Expanding, improving, and standardizing the use of SOGI measures is necessary to develop models of care and interventions that account for the unique cancer experiences of SGM individuals. Patients have demonstrated high levels of acceptability in routine collection of SOGI data in clinical settings and disclosure drives positive health outcomes. However, pairing SOGI data collection with cultural competency training for providers is critical.

IMPLICATIONS

Through sustained commitment and efforts, the strategic goals devised by the SGMRO, and the initiatives developed by the NIH will help advance rigorous research and expand relevant activities to better understand the unique needs and health challenges faced by SGM populations. SGM-specific cultural competency interventions tailored to practitioners and the workforce conducting research are a foundation pillar that will provide them with the necessary skills with the goal of delivering the most respectful and highest quality of care to every cancer patients, regardless of their sexual orientation and gender identity. Continued engagements to encourage and optimize accurate SOGI data collection will help adequately assess and specifically address SGM-specific cancer disparities in both research and clinical settings.