Commentary
The Importance of Disclosure: Lesbian, Gay, Bisexual, Transgender/Transsexual, Queer/Questioning, and Intersex Individuals and the Cancer Continuum Gwendolyn P. Quinn, PhD1,2; Matthew B. Schabath, PhD1,2; Julian A. Sanchez, MD3,4; Steven K. Sutton, PhD1,2; and B. Lee Green, PhD1
INTRODUCTION The lesbian, gay, bisexual, transgender/transsexual, queer/questioning, and intersex (LGBTQI) population is one of the most understudied and underserved populations in health disparities research.1,2 Previous studies have reported approximately 1% to 10% of the US population are lesbian, gay, and/or bisexual and approximately 1% to 3% are transgender.3,4 LGBTQI populations experience health disparities due to reduced access to health care and health insurance (when partnerships and marriages are not legally recognized) and are considered to be at an elevated risk of multiple types of cancer compared with nonLGBTQI populations. These increased risks are related to high rates of smoking and substance use, a high-fat diet, anal intercourse, and positive human immunodeficiency virus (HIV) status.5 In addition, low rates of early detection, lack of access to screening, and low uptake of cancer screening can result in poor outcomes and patient survival for LGBTQI populations.6-8 Low screening uptake is linked to several factors, including a lack of knowledge regarding the need for screening, lack of insurance, limited access to (or perception of) health care providers who will not discriminate based on LGBTQI status or who have knowledge of the specific health care needs of the populations, gender identity mismatch (eg, a person born a biological female who feels male will not participate in cervical cancer screening), and the general perception of homophobia in health care.7 Negative experiences and medical encounters reported by LGBTQI individuals range from institutional and societal issues to negative interpersonal interactions with health care providers perceived as discriminatory by patients.9,10 Traditionally, males and females were characterized by sex according to reproductive organs and biologic functions assigned by chromosomal complement. The vast majority of medical forms provide 2 options for sex: male or female. Gender traditionally referred to behaviors, characteristics, or socially constructed roles that a culture considered applicable for males and females.11 Moving beyond sex and gender as dichotomous constructs, gender identity refers to an individual’s sense of self that currently includes the following categories: male, female, transgender, intersex (individuals born with both female and male genitalia or a variant chromosomal pattern from XX or XY), and 2-spirit (having both masculine and feminine components12). As in the past, sexual orientation refers to attraction, behavior, and identity. However, there has been an expansion of self-descriptive categories such as heterosexual/straight, gay, lesbian, bisexual, queer, questioning, transspectrum, and other terms that may resonate with the individual.12 Presently, there is no universally agreed upon acronym for the lesbian, gay, bisexual, transgender/transsexual, queer/ questioning, and intersex community, which includes the variations of LGB, LGBT, GLBT, LGBTQ, and LGBTQI, to name a few. Collectively, these terms are self-reported and refer to gender identity and sexual orientation.5 Recognizing the unique health needs of specific populations within the LGBTQI umbrella, a 2013 report from the director of the National Institutes of Health cites “gaps and opportunities in LGBTQI research include depression, suicide, obesity, cancer risk, long-term hormone use, HIV/AIDS [acquired immune deficiency syndrome] and sexually transmitted infections, and substance use and abuse including alcohol, smoking, and other drugs.”3,13 A better understanding of how LGBTQI health needs change throughout the lifespan and how they are affected by other factors such as race, ethnicity, and Corresponding author: Gwendolyn P. Quinn, PhD, Division of Population Sciences, H. Lee Moffitt Cancer Center and Research Institute, 12902 Magnolia Dr, Tampa, FL 33612; Fax: (813) 745-6525; [email protected] 1 Division of Population Sciences, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida; 2Department of Oncologic Sciences, Morsani College of Medicine, University of South Florida, Tampa, Florida; 3Department of Surgery, Morsani College of Medicine, University of South Florida, Tampa, Florida; 4H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida
DOI: 10.1002/cncr.29203, Received: September 30, 2014; Revised: October 27, 2014; Accepted: November 20, 2014, Published online December 17, 2014 in Wiley Online Library (wileyonlinelibrary.com)
1160
Cancer
April 15, 2015
LGBTQI Cancer Screening/Quinn et al
socioeconomic status is needed. Understanding and improving the health, safety, and well-being of this diverse community is a growing public health concern and is a goal for the Centers for Disease Control and Prevention’s Healthy People 2020.14,15 This commentary stresses the importance of the at-risk status of the LGBTQI community for cancer health disparities across the continuum of cancer care and the need for providers and institutions to create environments that encourage disclosure.
Cancer Health Care Experiences
Research concerning LGBTQI and cancer health care perceptions and experiences is relatively sparse, particularly for transgender populations. Literature regarding LGBTQI experiences specific to cancer care is even more limited. There is a growing trend toward research involving overall health care experiences and barriers among sexual minorities. Outside of HIV/acquired immune deficiency syndrome (AIDS) work, this research is in its infancy. Negative health care experiences have been reported by LGBTQI individuals and their loved ones. These range from institutional and societal issues to negative interpersonal interactions perceived as discriminatory by patients.5,9 Perceptions of discrimination lead to social stigma. Social stigma is a stressor with profound mental health consequences, producing inwardly-directed feelings of shame and self-loathing. These internalized feelings may result in low self-esteem, suicidal ideation, depression, anxiety, substance abuse, tobacco use, and feelings of powerlessness and despair.11 For LGBTQI patients with cancer, the usual challenges of diagnosis and treatment are further complicated by the need to disclose sexual orientation and gender identity, which may be difficult based on previous negative health care experiences.2 Some individuals choose not to disclose their sexual orientation or gender identity to health care providers as a logical decision, given the frequency of the LGBTQI experience of negative attitudes through both overt and covert forms of discrimination.5 LGBTQI cancer survivors may also experience isolation more than heterosexual survivors. For example, counseling to address erectile dysfunction and coping skills may be geared toward heterosexual relationships.16 Not only may a gay man feel vulnerable for disclosing this to his oncologist, but there may be no resources geared toward his sexual orientation. Lesbian women surviving breast cancer report traditional resources for women involving hair loss from chemotherapy and coping skills for dealing with partners are created for heterosexual Cancer
April 15, 2015
women and these situations have different meanings within their community.17 Gay, Lesbian, and Bisexual Health
Health inequalities exist for the LGBTQI populations, and are often related to homophobia and heterosexism.1 Although the social situation of these populations has improved within the last few decades, health and the use of health care services are still affected by marginalization.3 Men who have sex with men and women with multiple sexual partners have the highest prevalence of human papillomavirus, a virus that is known to be associated with cervical, anal, penile, and some head and neck cancers (65% in gay men who are HIV negative and 95% in HIVpositive gay men).18 HIV infection and tobacco use increases the risk of anal and other cancers.19 There is evidence that gay men use health services less frequently than their heterosexual counterparts.20,21 Lesbian women have multiple risk factors for breast cancer, including higher smoking and obesity rates, greater alcohol use, and nulliparity.22 Lesbians tend to be less prevention-oriented in their health care behavior than heterosexual women.5 These issues can lead to the avoidance of routine health care and screening and reduced disclosure of sexual orientation to health care providers. Lesbian and bisexual women have specific needs in areas of sexual and cervical health, reproductive health and parenting, mental health, substance use, and aging.1 Research suggests that although a large percentage of lesbian women have positive health care experiences, many perceive their physicians as uncomfortable, prejudiced, or overtly condescending after disclosure of their sexual orientation.5 Many health care providers assume being gay or lesbian equals being depressed.3 Some lesbians report intense anxiety related to sexual orientation disclosure in health care settings, fearing such a disclosure will make them vulnerable to mistreatment and denial of care. Regardless, many lesbian women choose to disclose their sexual orientation in an effort to build open and trusting relationships with health care providers. Disclosure is widely regarded as having a positive impact on the health of LGBTQI individuals. Studies have suggested that disclosure results in greater satisfaction with health care providers as well as more routine receipt of preventive screenings.23 Queer, Questioning, Transgender/Transsexual, and Intersex Health
The state of research describing the cancer health care needs of queer, questioning, transgender/transsexual, and 1161
Commentary
intersex individuals is relatively young.24 Access to providers who are knowledgeable about transgender or intersex health issues is one of the most reported barriers to care, followed by access to transgender-friendly providers.25 In a recent study, 19% of transgender patients reported having been denied care because of their transgender status.26 Anecdotal reports suggest individuals who do not relate to the gender of their body may avoid gender-specific/sex-specific health care. For example, an individual who was born female but who identifies as male may forgo breast or cervical examinations.27 This population often has difficulty identifying competent and compassionate providers with transgender experience.28 There are significant legal restrictions and societal attitudes that can negatively affect the health care experiences of partnered relationships in this population.25 Health Care Setting
Health care providers play a significant role in promoting awareness of LGBTQI health issues and inequalities through education, research, and health policy.1 Health care providers’ attitudes are vital to the care of LGBTQI individuals.25 In the United States, there is limited access to certain basic rights for this population because there is a complex patchwork of legislation. The American Medical Association acknowledges that statewide bans on same-sex marriage contribute to health disparities.29 LGBTQI individuals’ experience of health care disparities will be eliminated only if clinicians elicit information regarding sexual orientation and gender identity and provide a nonjudgmental and empathetic environment.30 Medical institutions, physicians, nurse educators, practitioners, and policymakers have critical roles to play in the accessibility of health care and cancer care for LGBTQI individuals.31 Conclusions
LGBTQI individuals face many health care challenges, including issues of disclosure in the health care setting, discrimination, misconceptions, legal and financial barriers, and the disenfranchised stress and distress of caregiving same-sex partners. There is a recent trend toward awareness and the need for the inclusion of LGBTQI populations in health care.32 For many years, the prevailing attitude was not to ask patients about their sexual orientation. In a study of family physicians, only 1 physician reported routinely asking patients about their sexual orientation, the majority (80 physicians) reported rarely or never asking, and 44.4% reported they did not think they had any sexual minorities in their practice.33 The National Institutes of Health and 1162
the Institute of Medicine now recognize gender identity and sexual orientation as a vital aspect of health research and recommend the collection of this information as necessary for the accurate interpretation and validation of research findings and for the development of precision-based medicine. The Institute of Medicine report highlights the need for this information to be included in a patient’s medical records and federal entities are taking steps to create the nomenclature for these data in electronic health records.34 Although the “don’t ask, don’t tell” law pertaining to individuals serving in the military was repealed in 2011, health care settings may be slower to abolish old practices and prejudices. As health care providers, we must not assume to know the sexual orientation and gender identity of our patients. Furthermore, we must create environments that encourage and facilitate disclosure. This information is needed to provide the best quality and evidence-based care to our patients. There are several strategies for creating safe environments for disclosure. One is to ensure that you and your staff are trained in LGBTQI competencies. However, more research is needed on the most efficient way to deliver cultural competency training to providers that go beyond professional standards. It is not uncommon for providers to state “I treat all my patients the same.” This mentality underscores the need for training, because the goal of quality health care is for equity and not equality.35 The heteronormative assumptions of providers are the very reason why LGBTQI individuals do not want to be treated “the same.” It is also important to establish that intake forms and policies are gender-neutral. Be aware that your patients may have experienced discrimination or biases by a health care provider in the past and negative past experiences may make it difficult for patients to disclose samesex behavior in a health care setting. Providers should also be aware of their body language to create a nonjudgmental atmosphere. The LGBTQI patient may want to know why you are asking these personal questions. Be clear about how it relates to their cancer risk and specify how or if this information will be documented in the medical record and obtain the patient’s permission before doing so. Implementing these strategies may move the cancer community forward to closing the gap in cancer health disparities among LGBTQI populations. Last, the research community also must work toward the collection of gender identity and sexual orientation data in cancer observational studies and clinical trials. Such data will be imperative to evaluate the progress to reduce LGBTQI disparities, reveal where advancements must be made, and confirm that LGBTQI communities Cancer
April 15, 2015
LGBTQI Cancer Screening/Quinn et al
are well-represented in research. Moreover, to complement the aforementioned proposals, a priori research is needed to investigate the knowledge, attitudes, satisfaction, and quality of life among LGBTQI populations and their cancer health care providers. FUNDING SUPPORT No specific funding was disclosed.
CONFLICT OF INTEREST DISCLOSURES The authors made no disclosures.
REFERENCES 1. Hall HI, Frazier EL, Rhodes P, et al. Differences in human immunodeficiency virus care and treatment among subpopulations in the United States. JAMA Intern Med. 2013;173:1337-1344. 2. Whitfield KE, Bogart LM, Revenson TA, France CR. Introduction to the second special section on health disparities. Ann Behav Med. 2013;45:1-2. 3. Centers for Disease Control and Prevention. Sexual Orientation and Health Among U.S. Adults: National Health Interview Survey, 2013. National Health Statistics Reports. http://www.cdc.gov/nchs/ data/nhsr/nhsr077.pdf. Accessed November 28, 2014. 4. Gates GJ. How Many People are Lesbian, Gay, Bisexual, and Transgender? http://williamsinstitute.law.ucla.edu/wp-content/uploads/GatesHow-Many-People-LGBT-Apr-2011.pdf. Accessed November 28, 2014. 5. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington DC: National Academy of Sciences; 2011. 6. Buchmueller T, Carpenter CS. Disparities in health insurance coverage, access, and outcomes for individuals in same-sex versus differentsex relationships, 2000-2007. Am J Public Health. 2010;100:489-495. 7. Fredriksen-Goldsen KI, Kim H, Barkan SE, Muraco A, Hoy-Ellis CP. Health disparities among lesbian, gay, and bisexual older adults: results from a population-based study. Am J Public Health. 2013;103:1802-1809. 8. Kamen C, Palesh O, Gerry AA, et al. Disparities in health risk behavior and psychological distress among gay versus heterosexual male cancer survivors. LGBT Health. 2014;1:86-92. 9. Diamant AL, Schuster MA, Lever J. Receipt of preventive health care services by lesbians. Am J Prev Med. 2000;19:141-148. 10. Johnson CV, Mimiaga MJ, Bradford J. Health care issues among lesbian, gay, bisexual, transgender and intersex (LGBTI) populations in the United States: introduction. J Homosex. 2008;54:213-224. 11. World Health Organization. What Do We Mean by Sex and Gender? who.int/gender/whatisgender/en/. Accessed November 28, 2014. 12. NIH LGBT Research Coordinating Committee. Consideration of the Institute of Medicine (IOM) Report on the Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals.report.nih.gov/UploadDocs/LGBT%20Health%20Report_FINAL_2013-01-03-508%20compliant.pdf. Accessed November 28, 2014. 13. National Institutes of Health. Plans for Advancing LGBT Health Research. nih.gov/about/director/01032013_lgbt_plan.htm. Accessed November 28, 2014. 14. Centers for Disease Control and Prevention. Topic Areas of Healthy People 2020. cdc.gov/nchs/healthy_people/hp2020/hp2020_topic_ areas.htm. Accessed November 28, 2014. 15. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Healthy People 2020: Disparities. healthypeople.gov/2020/about/DisparitiesAbout.aspx. Accessed November 28, 2014.
Cancer
April 15, 2015
16. Blank TO. Gay men and prostate cancer: invisible diversity. J Clin Oncol. 2005;23:2593-2596. 17. Paul LB, Pitagora D, Brown B, Tworecke A, Rubin L. Support needs and resources of sexual minority women with breast cancer. Psychooncology. 2013;23:578-584. 18. Moscicki AB, Palefsky JM. Human papillomavirus in men: an update. J Low Genit Tract Dis. 2011;15:231-234. 19. Sahasrabuddhe VV, Castle PE, Follansbee S, et al. Human papillomavirus genotype attribution and estimation of preventable fraction of anal intraepithelial neoplasia cases among HIV-infected men who have sex with men. J Infect Dis. 2013;207:392-401. 20. Coulter RW, Kenst KS, Bowen DJ, Scout. Research funded by the National Institutes of Health on the health of lesbian, gay, bisexual, and transgender populations. Am J Public Health. 2014;104:e105e112. 21. Lee RS, Melhado TV, Chacko KM, White KJ, Huebschmann AG, Crane LA. The dilemma of disclosure: patient perspectives on gay and lesbian providers. J Gen Intern Med. 2008;23:142-147. 22. Cochran SD, Mays VM. Risk of breast cancer mortality among women cohabiting with same sex partners: findings from the National Health Interview Survey, 1997-2003. J Womens Health (Larchmt). 2012;21:528-533. 23. O’Hanlan KA, Robertson PA, Cabaj R, Schatz B, Nemrow P. A review of the medical consequences of homophobia with suggestions for resolution. J Gay Lesbian Med Assoc. 1997;1:25-39. 24. Chandra A, Mosher WD, Copen C, Sionean C. Sexual behavior, sexual attraction, and sexual identity in the United States: data from the 2006-2008 National Survey of Family Growth. Natl Health Stat Report. 2011;36:1-36. 25. The Fenway Institute. Asking Patients Questions About Sexual Orientation and Gender Identity in Clinical Settings: A Study in Four Health Centers. Boston, MA: The Fenway Institute and the Center for American Progress; 2013. 26. Grant J, Mottet L, Tanis J, Herman J, Harrison J, Keisling M. National Transgender Discrimination Survey Report on Health and Health Care. http://www.thetaskforce.org/static_html/downloads/ resources_and_tools/ntds_report_on_health.pdf. Accessed November 28, 2014. 27. Reisner SL, White JM, Bradford JB, Mimiaga MJ. Transgender health disparities: comparing full cohort and nested matched-pair study designs in a community health center. LGBT Health. 2014;1: 177-184. 28. Hoddinott SN, Bass MJ. The dillman total design survey method. Can Fam Physician. 1986;32:2366-2368. 29. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15:602-611. 30. Makadon HJ. Ending LGBT invisibility in health care: the first step in ensuring equitable care. Cleve Clin J Med. 2011;78:220-224. 31. Sinding C, Barnoff L, Grassau P. Homophobia and heterosexism in cancer care: the experiences of lesbians. Can J Nurs Res. 2004;36:170-188. 32. Rounds KE, McGrath BB, Walsh E. Perspectives on provider behaviors: a qualitative study of sexual and gender minorities regarding quality of care. Contemp Nurse. 2013;44:99-110. 33. Dahan R, Feldman R, Hermoni D. Is patients’ sexual orientation a blind spot of family physicians? J Homosex. 2008;55:524-532. 34. Cahill S, Makadon HJ. Sexual orientation and gender identity data collection update: U.S. government takes steps to promote sexual orientation and gender identity data collection through meaningful use guidelines. LGBT Health. 2014;1:157-160. 35. VHA Office of Health Equity. Lesbian, Gay, Bisexual & Transgender (LGBT) Veterans Internal Healthcare Fact Sheet. http:// www.lgbthealtheducation.org/wp-content/uploads/VHA-LGBT-VETERANS-INTERNAL-HEALTH-CARE-FACT-SHEET.pdf. Accessed November 28, 2014.
1163
Copyright of Cancer (0008543X) is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
The Importance of Disclosure: Lesbian, Gay, Bisexual, Transgender/Transsexual, Queer/Questioning, and Intersex Individuals and the Cancer Continuum Gwendolyn P. Quinn, PhD1,2; Matthew B. Schabath, PhD1,2; Julian A. Sanchez, MD3,4; Steven K. Sutton, PhD1,2; and B. Lee Green, PhD1
INTRODUCTION The lesbian, gay, bisexual, transgender/transsexual, queer/questioning, and intersex (LGBTQI) population is one of the most understudied and underserved populations in health disparities research.1,2 Previous studies have reported approximately 1% to 10% of the US population are lesbian, gay, and/or bisexual and approximately 1% to 3% are transgender.3,4 LGBTQI populations experience health disparities due to reduced access to health care and health insurance (when partnerships and marriages are not legally recognized) and are considered to be at an elevated risk of multiple types of cancer compared with nonLGBTQI populations. These increased risks are related to high rates of smoking and substance use, a high-fat diet, anal intercourse, and positive human immunodeficiency virus (HIV) status.5 In addition, low rates of early detection, lack of access to screening, and low uptake of cancer screening can result in poor outcomes and patient survival for LGBTQI populations.6-8 Low screening uptake is linked to several factors, including a lack of knowledge regarding the need for screening, lack of insurance, limited access to (or perception of) health care providers who will not discriminate based on LGBTQI status or who have knowledge of the specific health care needs of the populations, gender identity mismatch (eg, a person born a biological female who feels male will not participate in cervical cancer screening), and the general perception of homophobia in health care.7 Negative experiences and medical encounters reported by LGBTQI individuals range from institutional and societal issues to negative interpersonal interactions with health care providers perceived as discriminatory by patients.9,10 Traditionally, males and females were characterized by sex according to reproductive organs and biologic functions assigned by chromosomal complement. The vast majority of medical forms provide 2 options for sex: male or female. Gender traditionally referred to behaviors, characteristics, or socially constructed roles that a culture considered applicable for males and females.11 Moving beyond sex and gender as dichotomous constructs, gender identity refers to an individual’s sense of self that currently includes the following categories: male, female, transgender, intersex (individuals born with both female and male genitalia or a variant chromosomal pattern from XX or XY), and 2-spirit (having both masculine and feminine components12). As in the past, sexual orientation refers to attraction, behavior, and identity. However, there has been an expansion of self-descriptive categories such as heterosexual/straight, gay, lesbian, bisexual, queer, questioning, transspectrum, and other terms that may resonate with the individual.12 Presently, there is no universally agreed upon acronym for the lesbian, gay, bisexual, transgender/transsexual, queer/ questioning, and intersex community, which includes the variations of LGB, LGBT, GLBT, LGBTQ, and LGBTQI, to name a few. Collectively, these terms are self-reported and refer to gender identity and sexual orientation.5 Recognizing the unique health needs of specific populations within the LGBTQI umbrella, a 2013 report from the director of the National Institutes of Health cites “gaps and opportunities in LGBTQI research include depression, suicide, obesity, cancer risk, long-term hormone use, HIV/AIDS [acquired immune deficiency syndrome] and sexually transmitted infections, and substance use and abuse including alcohol, smoking, and other drugs.”3,13 A better understanding of how LGBTQI health needs change throughout the lifespan and how they are affected by other factors such as race, ethnicity, and Corresponding author: Gwendolyn P. Quinn, PhD, Division of Population Sciences, H. Lee Moffitt Cancer Center and Research Institute, 12902 Magnolia Dr, Tampa, FL 33612; Fax: (813) 745-6525; [email protected] 1 Division of Population Sciences, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida; 2Department of Oncologic Sciences, Morsani College of Medicine, University of South Florida, Tampa, Florida; 3Department of Surgery, Morsani College of Medicine, University of South Florida, Tampa, Florida; 4H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida
DOI: 10.1002/cncr.29203, Received: September 30, 2014; Revised: October 27, 2014; Accepted: November 20, 2014, Published online December 17, 2014 in Wiley Online Library (wileyonlinelibrary.com)
1160
Cancer
April 15, 2015
LGBTQI Cancer Screening/Quinn et al
socioeconomic status is needed. Understanding and improving the health, safety, and well-being of this diverse community is a growing public health concern and is a goal for the Centers for Disease Control and Prevention’s Healthy People 2020.14,15 This commentary stresses the importance of the at-risk status of the LGBTQI community for cancer health disparities across the continuum of cancer care and the need for providers and institutions to create environments that encourage disclosure.
Cancer Health Care Experiences
Research concerning LGBTQI and cancer health care perceptions and experiences is relatively sparse, particularly for transgender populations. Literature regarding LGBTQI experiences specific to cancer care is even more limited. There is a growing trend toward research involving overall health care experiences and barriers among sexual minorities. Outside of HIV/acquired immune deficiency syndrome (AIDS) work, this research is in its infancy. Negative health care experiences have been reported by LGBTQI individuals and their loved ones. These range from institutional and societal issues to negative interpersonal interactions perceived as discriminatory by patients.5,9 Perceptions of discrimination lead to social stigma. Social stigma is a stressor with profound mental health consequences, producing inwardly-directed feelings of shame and self-loathing. These internalized feelings may result in low self-esteem, suicidal ideation, depression, anxiety, substance abuse, tobacco use, and feelings of powerlessness and despair.11 For LGBTQI patients with cancer, the usual challenges of diagnosis and treatment are further complicated by the need to disclose sexual orientation and gender identity, which may be difficult based on previous negative health care experiences.2 Some individuals choose not to disclose their sexual orientation or gender identity to health care providers as a logical decision, given the frequency of the LGBTQI experience of negative attitudes through both overt and covert forms of discrimination.5 LGBTQI cancer survivors may also experience isolation more than heterosexual survivors. For example, counseling to address erectile dysfunction and coping skills may be geared toward heterosexual relationships.16 Not only may a gay man feel vulnerable for disclosing this to his oncologist, but there may be no resources geared toward his sexual orientation. Lesbian women surviving breast cancer report traditional resources for women involving hair loss from chemotherapy and coping skills for dealing with partners are created for heterosexual Cancer
April 15, 2015
women and these situations have different meanings within their community.17 Gay, Lesbian, and Bisexual Health
Health inequalities exist for the LGBTQI populations, and are often related to homophobia and heterosexism.1 Although the social situation of these populations has improved within the last few decades, health and the use of health care services are still affected by marginalization.3 Men who have sex with men and women with multiple sexual partners have the highest prevalence of human papillomavirus, a virus that is known to be associated with cervical, anal, penile, and some head and neck cancers (65% in gay men who are HIV negative and 95% in HIVpositive gay men).18 HIV infection and tobacco use increases the risk of anal and other cancers.19 There is evidence that gay men use health services less frequently than their heterosexual counterparts.20,21 Lesbian women have multiple risk factors for breast cancer, including higher smoking and obesity rates, greater alcohol use, and nulliparity.22 Lesbians tend to be less prevention-oriented in their health care behavior than heterosexual women.5 These issues can lead to the avoidance of routine health care and screening and reduced disclosure of sexual orientation to health care providers. Lesbian and bisexual women have specific needs in areas of sexual and cervical health, reproductive health and parenting, mental health, substance use, and aging.1 Research suggests that although a large percentage of lesbian women have positive health care experiences, many perceive their physicians as uncomfortable, prejudiced, or overtly condescending after disclosure of their sexual orientation.5 Many health care providers assume being gay or lesbian equals being depressed.3 Some lesbians report intense anxiety related to sexual orientation disclosure in health care settings, fearing such a disclosure will make them vulnerable to mistreatment and denial of care. Regardless, many lesbian women choose to disclose their sexual orientation in an effort to build open and trusting relationships with health care providers. Disclosure is widely regarded as having a positive impact on the health of LGBTQI individuals. Studies have suggested that disclosure results in greater satisfaction with health care providers as well as more routine receipt of preventive screenings.23 Queer, Questioning, Transgender/Transsexual, and Intersex Health
The state of research describing the cancer health care needs of queer, questioning, transgender/transsexual, and 1161
Commentary
intersex individuals is relatively young.24 Access to providers who are knowledgeable about transgender or intersex health issues is one of the most reported barriers to care, followed by access to transgender-friendly providers.25 In a recent study, 19% of transgender patients reported having been denied care because of their transgender status.26 Anecdotal reports suggest individuals who do not relate to the gender of their body may avoid gender-specific/sex-specific health care. For example, an individual who was born female but who identifies as male may forgo breast or cervical examinations.27 This population often has difficulty identifying competent and compassionate providers with transgender experience.28 There are significant legal restrictions and societal attitudes that can negatively affect the health care experiences of partnered relationships in this population.25 Health Care Setting
Health care providers play a significant role in promoting awareness of LGBTQI health issues and inequalities through education, research, and health policy.1 Health care providers’ attitudes are vital to the care of LGBTQI individuals.25 In the United States, there is limited access to certain basic rights for this population because there is a complex patchwork of legislation. The American Medical Association acknowledges that statewide bans on same-sex marriage contribute to health disparities.29 LGBTQI individuals’ experience of health care disparities will be eliminated only if clinicians elicit information regarding sexual orientation and gender identity and provide a nonjudgmental and empathetic environment.30 Medical institutions, physicians, nurse educators, practitioners, and policymakers have critical roles to play in the accessibility of health care and cancer care for LGBTQI individuals.31 Conclusions
LGBTQI individuals face many health care challenges, including issues of disclosure in the health care setting, discrimination, misconceptions, legal and financial barriers, and the disenfranchised stress and distress of caregiving same-sex partners. There is a recent trend toward awareness and the need for the inclusion of LGBTQI populations in health care.32 For many years, the prevailing attitude was not to ask patients about their sexual orientation. In a study of family physicians, only 1 physician reported routinely asking patients about their sexual orientation, the majority (80 physicians) reported rarely or never asking, and 44.4% reported they did not think they had any sexual minorities in their practice.33 The National Institutes of Health and 1162
the Institute of Medicine now recognize gender identity and sexual orientation as a vital aspect of health research and recommend the collection of this information as necessary for the accurate interpretation and validation of research findings and for the development of precision-based medicine. The Institute of Medicine report highlights the need for this information to be included in a patient’s medical records and federal entities are taking steps to create the nomenclature for these data in electronic health records.34 Although the “don’t ask, don’t tell” law pertaining to individuals serving in the military was repealed in 2011, health care settings may be slower to abolish old practices and prejudices. As health care providers, we must not assume to know the sexual orientation and gender identity of our patients. Furthermore, we must create environments that encourage and facilitate disclosure. This information is needed to provide the best quality and evidence-based care to our patients. There are several strategies for creating safe environments for disclosure. One is to ensure that you and your staff are trained in LGBTQI competencies. However, more research is needed on the most efficient way to deliver cultural competency training to providers that go beyond professional standards. It is not uncommon for providers to state “I treat all my patients the same.” This mentality underscores the need for training, because the goal of quality health care is for equity and not equality.35 The heteronormative assumptions of providers are the very reason why LGBTQI individuals do not want to be treated “the same.” It is also important to establish that intake forms and policies are gender-neutral. Be aware that your patients may have experienced discrimination or biases by a health care provider in the past and negative past experiences may make it difficult for patients to disclose samesex behavior in a health care setting. Providers should also be aware of their body language to create a nonjudgmental atmosphere. The LGBTQI patient may want to know why you are asking these personal questions. Be clear about how it relates to their cancer risk and specify how or if this information will be documented in the medical record and obtain the patient’s permission before doing so. Implementing these strategies may move the cancer community forward to closing the gap in cancer health disparities among LGBTQI populations. Last, the research community also must work toward the collection of gender identity and sexual orientation data in cancer observational studies and clinical trials. Such data will be imperative to evaluate the progress to reduce LGBTQI disparities, reveal where advancements must be made, and confirm that LGBTQI communities Cancer
April 15, 2015
LGBTQI Cancer Screening/Quinn et al
are well-represented in research. Moreover, to complement the aforementioned proposals, a priori research is needed to investigate the knowledge, attitudes, satisfaction, and quality of life among LGBTQI populations and their cancer health care providers. FUNDING SUPPORT No specific funding was disclosed.
CONFLICT OF INTEREST DISCLOSURES The authors made no disclosures.
REFERENCES 1. Hall HI, Frazier EL, Rhodes P, et al. Differences in human immunodeficiency virus care and treatment among subpopulations in the United States. JAMA Intern Med. 2013;173:1337-1344. 2. Whitfield KE, Bogart LM, Revenson TA, France CR. Introduction to the second special section on health disparities. Ann Behav Med. 2013;45:1-2. 3. Centers for Disease Control and Prevention. Sexual Orientation and Health Among U.S. Adults: National Health Interview Survey, 2013. National Health Statistics Reports. http://www.cdc.gov/nchs/ data/nhsr/nhsr077.pdf. Accessed November 28, 2014. 4. Gates GJ. How Many People are Lesbian, Gay, Bisexual, and Transgender? http://williamsinstitute.law.ucla.edu/wp-content/uploads/GatesHow-Many-People-LGBT-Apr-2011.pdf. Accessed November 28, 2014. 5. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington DC: National Academy of Sciences; 2011. 6. Buchmueller T, Carpenter CS. Disparities in health insurance coverage, access, and outcomes for individuals in same-sex versus differentsex relationships, 2000-2007. Am J Public Health. 2010;100:489-495. 7. Fredriksen-Goldsen KI, Kim H, Barkan SE, Muraco A, Hoy-Ellis CP. Health disparities among lesbian, gay, and bisexual older adults: results from a population-based study. Am J Public Health. 2013;103:1802-1809. 8. Kamen C, Palesh O, Gerry AA, et al. Disparities in health risk behavior and psychological distress among gay versus heterosexual male cancer survivors. LGBT Health. 2014;1:86-92. 9. Diamant AL, Schuster MA, Lever J. Receipt of preventive health care services by lesbians. Am J Prev Med. 2000;19:141-148. 10. Johnson CV, Mimiaga MJ, Bradford J. Health care issues among lesbian, gay, bisexual, transgender and intersex (LGBTI) populations in the United States: introduction. J Homosex. 2008;54:213-224. 11. World Health Organization. What Do We Mean by Sex and Gender? who.int/gender/whatisgender/en/. Accessed November 28, 2014. 12. NIH LGBT Research Coordinating Committee. Consideration of the Institute of Medicine (IOM) Report on the Health of Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals.report.nih.gov/UploadDocs/LGBT%20Health%20Report_FINAL_2013-01-03-508%20compliant.pdf. Accessed November 28, 2014. 13. National Institutes of Health. Plans for Advancing LGBT Health Research. nih.gov/about/director/01032013_lgbt_plan.htm. Accessed November 28, 2014. 14. Centers for Disease Control and Prevention. Topic Areas of Healthy People 2020. cdc.gov/nchs/healthy_people/hp2020/hp2020_topic_ areas.htm. Accessed November 28, 2014. 15. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Healthy People 2020: Disparities. healthypeople.gov/2020/about/DisparitiesAbout.aspx. Accessed November 28, 2014.
Cancer
April 15, 2015
16. Blank TO. Gay men and prostate cancer: invisible diversity. J Clin Oncol. 2005;23:2593-2596. 17. Paul LB, Pitagora D, Brown B, Tworecke A, Rubin L. Support needs and resources of sexual minority women with breast cancer. Psychooncology. 2013;23:578-584. 18. Moscicki AB, Palefsky JM. Human papillomavirus in men: an update. J Low Genit Tract Dis. 2011;15:231-234. 19. Sahasrabuddhe VV, Castle PE, Follansbee S, et al. Human papillomavirus genotype attribution and estimation of preventable fraction of anal intraepithelial neoplasia cases among HIV-infected men who have sex with men. J Infect Dis. 2013;207:392-401. 20. Coulter RW, Kenst KS, Bowen DJ, Scout. Research funded by the National Institutes of Health on the health of lesbian, gay, bisexual, and transgender populations. Am J Public Health. 2014;104:e105e112. 21. Lee RS, Melhado TV, Chacko KM, White KJ, Huebschmann AG, Crane LA. The dilemma of disclosure: patient perspectives on gay and lesbian providers. J Gen Intern Med. 2008;23:142-147. 22. Cochran SD, Mays VM. Risk of breast cancer mortality among women cohabiting with same sex partners: findings from the National Health Interview Survey, 1997-2003. J Womens Health (Larchmt). 2012;21:528-533. 23. O’Hanlan KA, Robertson PA, Cabaj R, Schatz B, Nemrow P. A review of the medical consequences of homophobia with suggestions for resolution. J Gay Lesbian Med Assoc. 1997;1:25-39. 24. Chandra A, Mosher WD, Copen C, Sionean C. Sexual behavior, sexual attraction, and sexual identity in the United States: data from the 2006-2008 National Survey of Family Growth. Natl Health Stat Report. 2011;36:1-36. 25. The Fenway Institute. Asking Patients Questions About Sexual Orientation and Gender Identity in Clinical Settings: A Study in Four Health Centers. Boston, MA: The Fenway Institute and the Center for American Progress; 2013. 26. Grant J, Mottet L, Tanis J, Herman J, Harrison J, Keisling M. National Transgender Discrimination Survey Report on Health and Health Care. http://www.thetaskforce.org/static_html/downloads/ resources_and_tools/ntds_report_on_health.pdf. Accessed November 28, 2014. 27. Reisner SL, White JM, Bradford JB, Mimiaga MJ. Transgender health disparities: comparing full cohort and nested matched-pair study designs in a community health center. LGBT Health. 2014;1: 177-184. 28. Hoddinott SN, Bass MJ. The dillman total design survey method. Can Fam Physician. 1986;32:2366-2368. 29. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15:602-611. 30. Makadon HJ. Ending LGBT invisibility in health care: the first step in ensuring equitable care. Cleve Clin J Med. 2011;78:220-224. 31. Sinding C, Barnoff L, Grassau P. Homophobia and heterosexism in cancer care: the experiences of lesbians. Can J Nurs Res. 2004;36:170-188. 32. Rounds KE, McGrath BB, Walsh E. Perspectives on provider behaviors: a qualitative study of sexual and gender minorities regarding quality of care. Contemp Nurse. 2013;44:99-110. 33. Dahan R, Feldman R, Hermoni D. Is patients’ sexual orientation a blind spot of family physicians? J Homosex. 2008;55:524-532. 34. Cahill S, Makadon HJ. Sexual orientation and gender identity data collection update: U.S. government takes steps to promote sexual orientation and gender identity data collection through meaningful use guidelines. LGBT Health. 2014;1:157-160. 35. VHA Office of Health Equity. Lesbian, Gay, Bisexual & Transgender (LGBT) Veterans Internal Healthcare Fact Sheet. http:// www.lgbthealtheducation.org/wp-content/uploads/VHA-LGBT-VETERANS-INTERNAL-HEALTH-CARE-FACT-SHEET.pdf. Accessed November 28, 2014.
1163
Copyright of Cancer (0008543X) is the property of John Wiley & Sons, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
