Understanding Disparities: A Case Illustrative of the Struggles Facing Transgender and Gender Diverse Patients With Cancer

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Elizabeth J. Cathcart-Rake
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Juliana M. Kling
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Evelyn F. Carroll
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Caroline Davidge-Pitts
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Jennifer Le-Rademacher
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Jennifer L. Ridgeway
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Cesar A. Gonzalez
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Aminah Jatoi
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The Institute of Medicine, the American Cancer Society, the American Association for Cancer Research, the American Society of Clinical Oncology, and the National Institutes of Health have all recognized transgender and gender diverse (TGD) individuals as medically underserved and in need of clinical research aimed at the successful delivery of equitable healthcare.15 Improving the poorer cancer outcomes among TGD individuals is important. The first step to mitigating these disparities is identifying TGD people in the electronic health record (EHR) and discussing individual needs and preferences at the point of care. The cancer-specific needs of TGD people and the challenges of identifying these needs to adequately address them are noteworthy,2,3 as highlighted in the following case.

A 48-year-old nonbinary person with no contributory medical or family history was diagnosed with a locally advanced, estrogen receptor–positive, progesterone receptor–negative, HER2-negative breast cancer. The patient elected to pursue bilateral mastectomy without reconstruction, an axillary lymph node dissection, and then adjuvant chemotherapy and endocrine therapy.

At the initial oncology appointment, the patient requested that a different version of their first name (“Eli”, changed here to protect anonymity) be used during the clinic visit and that no specific male or female pronouns be used. Although Eli shared Eli’s nonbinary identity with the treating oncologist, Eli did not wish to disclose Eli’s gender identity with their other clinicians. Eli’s sex assigned at birth (SAB) was clearly identifiable throughout the medical record due to the SAB-specific nature of treatments for Eli’s cancer (such as utilization of ovarian function suppression), and therefore the patient requested that both SAB and gender identity remain as female within the EHR. Throughout the patient’s clinical course, other members of their cancer care team used female pronouns both with the patient and to describe the patient in medical discussion and in the medical record. Eli’s concerns for privacy and safety were paramount.

Eli noted feeling that their decision to pursue bilateral mastectomy without reconstruction was questioned by numerous members of the healthcare team both prior to and following their surgery. Although the patient found bilateral mastectomy to be a gender-affirming surgery, Eli reported being told by clinicians that Eli would regret the lack of implant-based reconstruction in the future. The patient felt judged by clinicians who used euphemisms such as “you won’t look the same in a swimsuit,” implying that such a surgery would make their outward appearance less stereotypically feminine.

Although we present this single case, there are likely a number of patients who experience gender-related struggles after a cancer diagnosis; these have not yet been well-captured.6

More than 1.6 million people (youth and adults) in the United States—a number that exceeds the population of Phoenix, Arizona—identify as TGD.7 TGD individuals comprise transgender men who identify as male and were assigned female sex at birth, transgender women who identify as female and were assigned male sex at birth, nonbinary individuals who do not identify solely with either gender, and individuals who find other terms to affirm their identity (genderqueer, among others). More than 62,000 TGD people are also cancer survivors.8 The number of transgender youth has doubled over the last decade, reflective of the expanding nature of this dynamic group.7 Yet, TGD patients continue to face discrimination, even in the setting of a cancer diagnosis, as illustrated in the above clinical case.

TGD people face numerous healthcare-related disparities, such as higher rates of uninsurance and unequal access to preventive healthcare screenings, including lower rates of cancer screenings.911 Furthermore, more than a quarter of TGD patients report delayed medical care due to past discrimination, and half report having to teach their healthcare providers about how to render healthcare to TGD individuals.10 Such disparities translate into poorer health outcomes, including higher rates of cancer-specific mortality from non-Hodgkin lymphoma and prostate and bladder cancers.12

In the example described, Eli’s fear of discrimination contributed to a lack of reporting of gender identity within the healthcare record. This patient was identified as cisgender through the EHR by default, but also per Eli’s request in the setting of their concerns for differential treatment by clinicians if their identity was disclosed. The subsequent distress related to their clinical team’s poor understanding of this patients’ identity—the use of nonaffirming pronouns and the gender-policing of Eli’s decision not to undergo implant-based reconstruction—was invisible to many of Eli’s clinicians, and also would be to any outside researcher who leveraged electronic data on sex/gender alone to better understand and mitigate TGD-specific disparities. Thus, it is little wonder that surveys, from large-scale, national programs such as the SEER Program to single-site tumor registries, have historically inconsistently obtained gender identity and SAB information.2,6,13 In response to recommendations by national organizations and guidelines, there have been notable improvements in the conduct of some large-scale surveys, such as the Behavioral Risk Factor Surveillance Survey (BRFSS) and the National Health Interview Survey (NHIS), as well as individual EHRs, which have begun to collect information on gender identity and SAB.14 However, although such improvements in collection of gender identity and SAB information contribute to the understanding of the healthcare disparities facing TGD people, these advances are hampered by their reliance on self-report of gender identity and SAB, as highlighted by the present case.

As shown in the present case, TGD individuals may be reluctant to disclose their gender identity and SAB, such that the needs facing this emerging group of people are likely underestimated. In smaller healthcare surveys, such as tumor registries, and in EHRs, privacy protections may be unapparent and/or absent, causing patients to decline disclosure.14,15 Although most TGD people feel that disclosure of their gender identity is important, one study reported that two-thirds of TGD teens do not disclose their gender identity to their clinician; lower rates of disclosure are seen when participants are not told the relevance of gender identity/SAB questions.14,1618 TGD people also report nondisclosure on large-scale, nationwide surveys, citing fears that disclosure may create further avenues for discrimination and thereby hamper access to essential services, or that conflicting gender identity/SAB classifications may cause entanglement within bureaucratic or administrative systems.14 Further complicating such concerns, these large-scale datasets, such as the BRFSS, have an approximately 30% rate of misclassification of SAB due to discordance between surveyor and participant reports, which introduces significant bias in reporting of outcomes.19,20

How can we remedy this lack of information that hinders our ability to provide TGD individuals the appropriate cancer care?

First, healthcare records are vast sources of information for billing, prescription, and procedural codes that can be used in healthcare delivery research on cancer outcomes. These resources can be used to identify TGD individuals using data related to the procedure or service, without reliance on reports from the individual. These resources can be used to identify TGD individuals with the goal of better understanding their cancer outcomes. For instance, transwomen who have undergone gender affirmation might be identified by Current Procedural Terminology (CPT) billing codes for vaginoplasty and/or clitoroplasty and/or receipt of female hormone therapy regardless of how sex/gender is recorded for the patient. People who have not undergone gender affirmation therapies might be identifiable by combinations of TGD-specific office visit billing codes (for instance, “gender dysphoria”) and/or billing codes (“condition 45” codes or “endocrine disorder, unspecified”) utilized by clinicians for claims in which there are mismatches in sex and gender identity. Such methodologies have been validated in prior studies but have not been broadly applied to TGD-related research.21 Although not all TGD patients undergo affirmation procedures, such data can nonetheless serve as a starting point to better understand cancer outcomes and patient needs.

Second, social media offers multiple spaces in which TGD voices may be amplified with minimal judgement, wherein TGD people build communities, foster support, and provide peer-to-peer education and advice.22 Indeed, social media is a frequent source of information for TGD people embarking on gender affirmation procedures.23 It is important to note that social media is not always a supportive space; it can also be a source for the dissemination of hate speech towards TGD individuals; in recent times it has served to spur violence toward TGD people and their treating clinicians. Nevertheless, engagement between clinicians and patients on social media has been a successful way to provide education and debunk health myths, and well-intentioned researchers may be able to utilize social media as a platform to gather data on experiences of TGD people.24,25 Such data gathering might be qualitative; for example, the review of blogs, posts, and videos shared by TGD people. It also might be quantitative, as social media may offer a space where TGD people might feel more comfortable answering survey questions, if the well-meaning intent of the researchers is clear.

Third, clinics where gender affirmation treatment is provided routinely, where anatomy inventories are often completed, and where trust between clinicians and patients is strong are another source whereby TGD patients can be relied upon to share their experiences. Integrating research and clinical care within gender-affirming multidisciplinary clinics allows patients to share their experiences in a space where their identities are known and respected, and where the well-intended nature of the research is clear; 2 aspects to TGD-related research that are known to improve disclosure of gender identity and SAB.14,1618

Finally, and perhaps most importantly, there is a critical need for healthcare practitioners and systems to focus on ways to eliminate their own expressions of unconscious or conscious bias and to discuss gender identity with patients in a way that is welcoming and nonjudgmental, thereby allowing TGD people to feel comfortable disclosing their gender identity. Clinicians are reluctant to ask about gender identity, due to both patient-centric reasons, such as fear of offense or violating patient privacy, and clinician-centric reasons, such as time pressures or lack of tools to be able to address TGD-specific questions.26 Efforts, including those by the co-authors on this manuscript, are underway to mitigate both clinician and patient-centric reasons for inadequate discussions of gender identity/SAB and to improve such discussions in healthcare clinics. Healthcare systems must create environments that are welcoming to TGD people. Gender diverse signage in clinics and hospitals, inclusive language on forms, hiring of staff who identify as TGD, and investments in the education of all staff in TGD-specific competencies are supremely important. TGD people will be able to achieve equitable care only if clinicians and healthcare systems provide an intentionally welcoming and medically appropriate space for TGD people. In addition to the recommendations discussed, clinicians need to have personal conversations with themselves about how they accept patients for who they are and provide patients optimal cancer care.

References

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ELIZABETH J. CATHCART-RAKE, MD

Elizabeth J. Cathcart-Rake, MD, is medical oncologist at Mayo Clinic with a clinical specialty in treating breast/chest cancer. She aims to improve care for LGBTQIA+ folks with and at risk for cancer through clinical care and research.

JULIANA M. KLING, MD, MPH

Juliana M. Kling, MD, MPH, is Professor of Medicine, Chair of the Division of Women’s Health Internal Medicine, and Associate Chair of Equity, Inclusion and Diversity for the Department of Medicine at Mayo Clinic in Scottsdale, Arizona.

EVELYN F. CARROLL, MD

Evelyn F. Carroll, MD, is a breast imaging radiology fellow at NYU Langone and a Mayo Clinic Scholar. Upon completion of her fellowship year, she will be returning to Mayo Clinic as an Assistant Professor of Radiology.

CAROLINE DAVIDGE-PITTS, MB, BCh

Caroline Davidge-Pitts, MB, BCh, is an Associate Professor of Medicine and Associate Practice Chair of the Division of Endocrinology, Diabetes, and Nutrition at Mayo Clinic Rochester. She is the medical director of the Transgender and Intersex Specialty Care Clinic and is actively involved in clinical care, research, and education.

JENNIFER LE-RADEMACHER, PhD

Jennifer Le-Rademacher, PhD, is a Professor in Biostatistics and Oncology. Her research focuses on cancer clinical trials methodology with special emphasis on cancer-related and cancer therapy–related toxicities and underrepresentation of older adults in cancer clinical trials.

JENNIFER L. RIDGEWAY, PhD

Jennifer L. Ridgeway, PhD, is an Assistant Professor in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, where she is also the scientific director for the Implementation and Evaluation Science program. Her research interests include relationship-centered care, interdisciplinary collaboration, and implementation of remote and technology-enabled models of care, especially for individuals with multiple chronic conditions and cancer.

CESAR A. GONZALEZ, PhD, LP

Cesar A. Gonzalez, PhD, LP, (he/they), is a clinical health psychologist and assistant professor of psychology and family medicine. Dr. Gonzalez has been involved in transgender health since 2003; he serves as the clinical director of the Transgender and Intersex Specialty Care Clinic, an associate program director of the Family Medicine Residency Program, and director of the Clinical Health Psychology Fellowship at Mayo Clinic in Rochester, Minnesota.

AMINAH JATOI, MD

Aminah Jatoi, MD, is a practicing medical oncologist who holds interests in geriatric oncology, symptom palliation, and health equity among all with cancer, including sexual and gender minority patients.

Disclosures: The authors have disclosed that they have no financial interests, arrangements, or affiliations with the manufacturers of any products discussed in this article or their competitors.

Funding: This work was supported in part by 1K07AG076401-01A1: Older Sexual and Gender Minority Patients With Serious Illness: Program-Building to Identify and Address Needs (A. Jatoi).

Correspondence: Elizabeth J. Cathcart-Rake, MD, Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN 55905.
  • Collapse
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  • 1.

    Simon S. Breaking Down Health Care Barriers for LGBT Community. Accessed May 10, 2022, 2022. Available at: https://www.cancer.org/latest-news/breaking-down-health-care-barriers-for-lgbt-community.html

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 2.

    Griggs J, Maingi S, Blinder V, et al. American Society of Clinical Oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol 2017;35:22032208.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 3.

    Olsen K. AACR Conference examines cancer disparities in the LGBTQ population. Accessed May 10, 2022. Available at: https://www.aacr.org/blog/2021/01/26/aacr-conference-examines-cancer-disparities-in-the-lgbtq-population/

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Paschall P. National Institutes of Health releases report on LGBT health. National LGBTQ Task Force. Accessed May 10, 2022. Available at: https://www.thetaskforce.org/national-institutes-of-health-releases-report-on-lgbt-health/

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 5.

    Kuehn BM. IOM: data on health of lesbian, gay, bisexual, and transgender persons needed. JAMA 2011;305:19501951.

  • 6.

    Cathcart-Rake EJ, Lightner DJ, Quevedo FJ, et al. Cancer in transgender patients: one case in 385,820 is indicative of a paucity of data. J Oncol Pract 2018;14:270272.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 7.

    Herman JL, Flores AR, O’Neill KK. How many adults and youth identify as transgender in the United States? Accessed May 10, 2022. Available at: https://williamsinstitute.law.ucla.edu/wp-content/uploads/Trans- Pop-Update-Jun-2022.pdf

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 8.

    Boehmer U, Gereige J, Winter M, et al. Transgender individuals’ cancer survivorship: results of a cross-sectional study. Cancer 2020;126:28292836.

  • 9.

    Luehmann N, Ascha M, Chwa E, et al. A single-center study of adherence to breast cancer screening mammography guidelines by transgender and non-binary patients. Ann Surg Oncol 2022;29:17071717.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 10.

    Grant J, Mottet L, Tanis J, et al. Injustice at every turn: a report of the National Transgender Discrimination Survey. Accessed May 10, 2022. Available at: https://transequality.org/sites/default/files/docs/resources/NTDS_Report.pdf

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 11.

    James S, Herman J, Rankin S, et al. Executive Summary of the Report of the 2015 U.S. Transgender Survey. National Center for Transgender Equality; 2016.

  • 12.

    Jackson SS, Han X, Mao Z, et al. Cancer stage, treatment, and survival among transgender patients in the United States. J Natl Cancer Inst 2021;113:12211227.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 13.

    Cathcart-Rake EJ, Zemla T, Jatoi A, et al. Acquisition of sexual orientation and gender identity data among NCI Community Oncology Research Program practice groups. Cancer 2019;125:13131318.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 14.

    McKay T, Watson RJ. Gender expansive youth disclosure and mental health: clinical implications of gender identity disclosure. Psychol Sex Orientat Gend Divers 2020;7:6675.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 15.

    Thompson HM. Patient perspectives on gender identity data collection in electronic health records: an analysis of disclosure, privacy, and access to care. Transgend Health 2016;1:205215.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 16.

    Suen LW, Lunn MR, Sevelius JM, et al. Do ask, tell, and show: contextual factors affecting sexual orientation and gender identity disclosure for sexual and gender minority people. LGBT Health 2022;9:7380.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 17.

    Maragh-Bass AC, Torain M, Adler R, et al. Is it okay to ask: transgender patient perspectives on sexual orientation and gender identity collection in healthcare. Acad Emerg Med 2017;24:655667.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 18.

    Maragh-Bass AC, Torain M, Adler R, et al. Risks, benefits, and importance of collecting sexual orientation and gender identity data in healthcare settings: a multi-method analysis of patient and provider perspectives. LGBT Health 2017;4:141152.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 19.

    Tordoff D, Andrasik M, Hajat A. Misclassification of sex assigned at birth in the behavioral risk factor surveillance system and transgender reproductive health: a quantitative bias analysis. Epidemiology 2019;30:669678.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 20.

    Cicero EC, Reisner SL, Merwin EI, et al. Application of behavioral risk factor surveillance system sampling weights to transgender health measurement. Nurs Res 2020;69:307315.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 21.

    Proctor K, Haffer SC, Ewald E, et al. Identifying the transgender population in the Medicare program. Transgend Health 2016;1:250265.

  • 22.

    Cannon Y, Speedlin S, Avera J. Transition, connection, disconnection, and social media: examining the digital lived experiences of transgender individuals. J LGBT Issues Couns 2017;11:6887.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23.

    Schimmel-Bristow A, Haley S, Crouch J, et al. Youth and caregiver experiences of gender identity transition: a qualitative study. Psychol Sex Orientat Gend Divers 2018;5:273281.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24.

    Safer J. I’m Joshua Safer, Medical Director at the Center for Transgender Medicine and Surgery at Boston University Medical Center, here to talk about the science behind transgender medicine, AMA! Transgender Health AMA Series: Reddit; 2017. Available at: https://www.reddit.com/r/science/comments/6p7uhb/transgender_health_ama_series_im_joshua_safer/

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 25.

    Howe A, Anderson J. Involving patients in medical education. BMJ 2003;327:326328.

  • 26.

    Cathcart-Rake EJ, Breitkopf CR, Kaur J, et al. Teaching health-care providers to query patients with cancer about sexual and gender minority (SGM) status and sexual health. Am J Hosp Palliat Care 2019;36:533537.

    • PubMed
    • Search Google Scholar
    • Export Citation
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