How do you ask a new patient about sex and gender—or know which pronoun to use? Keep the conversation straightforward and respectful to put everyone at ease, says Morgan Orndorff, a transgender man who works as an administrator at a major academic medical center.
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“Everyone is a little different in terms of their sensitivity level” when it comes to talking about sex and gender, says Mr. Orndorff, senior new patient intake coordinator at Johns Hopkins Medicine Division of Rheumatology in Baltimore. Mr. Orndorff told his parents that he wanted to have a sex change when he was six years old. He is now going through transition therapy. At Johns Hopkins, he builds each new patient’s chart in the hospital’s electronic health record (EHR) with information on sex at birth, gender identity and preferred pronoun.
Rheumatologists and rheumatology health professionals need to clarify sex and gender with new patients who are transgender, intersex or genderqueer (see the sidebar below, for definitions of these and other related terms), says Mr. Orndorff. He suggests starting by asking the patient’s name and preferred pronoun, followed by any important clinical questions. Rheumatologists need to know if a patient has female sex organs and could become pregnant while using a teratogenic drug, such as methotrexate, or if a patient is taking hormones for transition, which can affect bone and cardiovascular health, he says.1
Existing labels regarding gender and sex often fall short, says Mr. Orndorff.
“I don’t even like the word transgender. I feel like a straight male. Times have changed drastically,” he says. “It’s a different day and age now. I know my physicians want to give me the best care possible.”
Get to Know Each Patient
The patient intake process is a good time to explore gender and sex, says Jillian Rose, LCSW, MPH, assistant director of community engagement, diversity and research at the Hospital for Special Surgery in New York.
Intake forms should include questions about the patient’s sex at birth, gender identity, preferred pronouns and sexual orientation. “Knowing the answers to those questions allows clinicians to refer to patients with dignity and respect, and fosters trust from the beginning of the medical encounter,” says Ms. Rose. This knowledge may also help the rheumatologist ask questions about issues that may “disproportionately affect this population, such as substance abuse, mental health concerns and appropriate hormone use, that can impact care.”
New patient questionnaires may be modified to include sex and gender data, and this may make a potentially touchy conversation easier for clinicians, says Mr. Orndorff. Some patients may not want to conform to a particular category regarding their gender or sexuality. “Younger people often seem to say they want to be nonbinary. What does that even mean?” he asks. “But our doctors are getting younger, too, so they may be more attuned to these things and feel comfortable asking a patient about their preferred gender or pronoun or sex.”
Alexander William Rose Beckenstein, also a transgender man, is being treated by a rheumatologist for mixed connective tissue disease (MCTD). This rare autoimmune disease may be accompanied by arthralgia, Raynaud’s phenomenon and other symptoms seen in more common rheumatic diseases, such as systemic lupus erythematosus, scleroderma or even rheumatoid arthritis, and some patients go on to develop lupus or systemic sclerosis.2 His rare autoimmune disease was diagnosed when doctors noticed elevated markers in his blood tests related to his top surgery, a procedure to alter his breasts for his transition to male gender.
“I find having an autoimmune disease while being FTM [female-to-male transitioning] very ironic, considering I do not feel like my body is my own. It seems like my immune system also sees my body as a foreign entity and attacks it,” says Mr. Beckenstein, who lives in New York City. During some interactions with medical professionals for his MCTD treatments, he says he has been “sadly surprised by the lack of desire for knowledge about how to make me feel more comfortable by using the right pronouns. My current doctor has been wonderful and fully respectful, but those interactions are few and far between.” He says some healthcare providers have made him feel like “just another female body,” rather than an individual with his own unique identity.
Mr. Beckenstein … says he has been ‘sadly surprised by the lack of desire for knowledge about how to make me feel more comfortable by using the right pronouns. My current doctor has been wonderful & fully respectful, but those interactions are few & far between.’
Sex Affects Risk
A patient’s sex affects his or her risk of developing certain rheumatic diseases, as well as potential treatment decisions, says Michael D. Lockshin, MD, director of the Barbara Volcker Center for Women and Rheumatic Diseases at Hospital for Special Surgery.
“For unknown reasons, most autoimmune diseases affect mostly women, including a 9-to-1 ratio for lupus, Hashimoto’s thyroiditis, autoimmune liver diseases and others; and a 3-to1 ratio for rheumatoid arthritis (RA) and scleroderma,” says Dr. Lockshin. “Investigators tend to attribute this fact to female hormones or chromosomes, but there are many other possible explanations, including environmental.”
Autoimmune diseases, such as RA or lupus, may have a profound effect on a patient’s pregnancy and child-rearing experiences, both physical and psychological, says Dr. Lockshin. Pregnancy also has an effect on rheumatic diseases, he says. Rheumatologists must consider a patient’s sex, gender, family planning goals and sexuality when making certain treatment decisions.
“Choices of medications are dictated by the fertility and pregnancy desires” of the patient, he says. “Because of symptoms like vaginal dryness and changes in appearance and mood, autoimmune diseases affect normal sexual behavior and pleasure. Choices of contraception are restricted by autoimmune diseases and their treatment. The primary concerns are fertility and pregnancy, since many available medications can affect either or both. An additional concern for rheumatologists is the manner in which hormonal contraception may or may not be used, both for fear of worsening illness and of drug interactions that change treatment plans.”
Due to his MCTD, Mr. Beckenstein has put off hormone replacement therapy for his transition due to concerns about lupus risk, which he says has been hard to endure.
“Although I very much believe that there are links between estrogen and lupus, and there are studies out there connecting the reduction of symptoms to androgenizing individuals, doctors are extremely wary about starting me on testosterone,” he says. “A major hurdle faced in being trans [a slang term for transgender] is learning to feel like one’s body belongs to you, but as a chronic illness patient, it feels much more like my body is a piece of medical property.”
Rheumatologists treating intersex or transgender patients may have more challenges with “negotiating interpersonal interactions, such as gender labeling in conversation or interactions with staff,” than with clinical ones, says Dr. Lockshin. Staff training on sexual and gender diversity, and sensitivity in talking with lesbian, gay, bisexual and transgender (LGBT) patients will reduce those challenges, says Mr. Orndorff.
Physicians need to know if a patient has female sex organs & could become pregnant while using a teratogenic drug, such as methotrexate, or if a patient is taking hormones for transition, which can affect bone & cardiovascular health.
Hormonal Therapy & Surgery
Transgender individuals’ biological sex does not match their gender identity. Although statistics on the size of the transgender population vary, one 2011 study by the Williams Institute of the University of California at Los Angeles estimated that 700,000 transgender individuals are living in the U.S.3
Intersex individuals have “a discrepancy between the external genitals and internal genitals,” according to the National Institutes of Health, due to one of many chromosomal conditions, such as Klinefelter syndrome (XXY sex chromosomes), which affects about one in 650 newborn males, or the much rarer androgen insensitivity syndrome (genetically male, unable to respond to androgens, and often with female external sexual characteristics), which affects approximately two to five out of 100,000 genetically male people, among others.4,5
An increasing number of transgender men and women are undergoing hormone therapy as part of their transition process, which may also include surgery to remove sexual organs and alter the appearance or function of genitalia.6 According to the American Society of Plastic Surgeons’ 2016 Plastic Surgery Statistics Report, 3,256 gender affirmation surgeries were performed in the U.S. in 2016, a 19% increase over the previous year.7
Gender affirmation interventions may be clinically relevant to a rheumatologist making treatment decisions, but “the level of detail may differ according to the patient’s immediate problem,” says Dr. Lockshin. “Hormone status is important in the management of most autoimmune illnesses.”
Healthcare providers should ask new patients about any sexual organs they have, even if the patient plans to have surgery, due to potential drug interactions or risks, says Mr. Orndorff.
“I think it’s pertinent information to know, but that’s just like every other patient. This is where it can get dicey. If you still have female parts, you still have to see an OB/GYN,” he says. Mr. Orndorff also works as an emergency medical technician and says he often has to ask questions about a patient’s sex or gender. “We may think Viagra [sildefanil citrate] is made for men, but I have to ask female patients if they’re taking it, because if I give them nitroglycerine in an emergency, they could die. It’s medically necessary to ask questions.”
EMRs & Registries
At both Johns Hopkins and Hospital for Special Surgery, new patients are asked about their gender, sex at birth and preferred pronoun, and this information is entered in their charts in the electronic health record (EHR) system. However, it is unclear how rheumatologists use this information, if at all.
“Given the negative experiences many transgender and other gender-nonconforming patients experience in the healthcare system, it is important to capture gender identity in the EHR to study outcomes and uncover health disparities,” says Jinoos Yazdany, MD, MPH, associate professor of medicine at the University of California, San Francisco, and chair of the ACR’s Committee on Registries & Health Information Technology. The ACR’s qualified clinical data registry, Rheumatology Informatics System for Effectiveness (RISE), collects data on sex. RISE downloads information directly from users’ EHR systems. Dr. Yazdany says, “EHRs increasingly have the functionality to record gender identity, but as we look across RISE practices, few rheumatologists are using this functionality.”
In 2015, the Hospital for Special Surgery implemented mandatory training for registration and patient access staff on LBGT healthcare disparities, sensitivities and potentially challenging patient scenarios, says Ms. Rose. These moves were in response to new regulations designed to reduce health disparities in the LGBT population in the Affordable Care Act and from the Centers for Medicare and Medicaid Services (CMS), as well as best practices suggested by hospital accreditation organizations, such as the Joint Commission, that call for improving patient–provider communications, she says.
“If a clinician [selects] the chart of a patient who identified as intersex or [noted] their gender identity as different from their birth sex, before the clinician [accesses] the chart, a best practice warning pops up” that alerts the clinician to use the preferred name and pronoun, and prompts them to ask particular questions during the patient assessment, she says. These functions can make the clinic experience feel more inclusive to transgender or intersex patients, and aid the healthcare provider’s decision-making process, says Ms. Rose.
“If providers are aware of this information, they can provide screenings before surgeries, such as pregnancy testing for transgender male patients, and referrals for mammograms as appropriate. They can also refer transgender female patients for appropriate preventive screenings, such as a prostate exam,” she says.
If a patient’s birth sex does not match their gender identity, clinicians need to know that laboratory test values in the EHR may be atypical.
“Being aware of these issues is a key first step,” says Ms. Rose. “However, making the information relevant to clinical practice is critical.”
Susan Bernstein is a freelance medical journalist based in Atlanta.
Sex & Gender: Useful Terms
Transgender: Gender identity that doesn’t conform with a person’s assigned sex at birth. Also called “trans” for short. May not reflect hormonal makeup, sexual orientation or physical characteristics.
Cisgender: A person who identifies with their assigned sex at birth. Also called “cis” for short. This term may not reflect hormonal makeup, sexual orientation or physical characteristics.
Genderqueer: Someone who may not define themself as either male or female gender, or does not wish to conform to binary gender identities or labels.
Intersex: A group of chromosomal conditions that involve a discrepancy between a person’s external genitalia and internal genital organs, such as ovaries or testes. People who are intersex may have uncommon combinations of hormones, chromosomes and anatomical characteristics that are typically used to assign sex at birth.
Gender Affirmation Surgery: Various procedures to alter the external genitalia, internal sexual organs and/or external appearance. Not all transgender individuals have surgery.
Sources: Trans Student Educational Resources and the U.S. National Library of Medicine of the National Institutes of Health
- Unger CA. Hormone therapy for transgender patients. Transl Androl Urol. 2016 Dec;5(6):877–884.
- Ungprasert P, Crowson CS, Chowdary VR, et al. Epidemiology of mixed connective tissue disease, 1985–2014: A population-based study. Arthritis Care Res (Hoboken). 2016 Dec;68(12):1843–1848.
- Gates GJ. How many people are lesbian, gay, bisexual and transgender? Williams Institute, UCLA School of Law. 2011 Apr.
- Boada R, Janusz J, Hutaff-Lee C, et al. The cognitive phenotype in Klinefelter syndrome: A review of the literature including genetic and hormonal factors. Dev Disabil Res Rev. 2009;15(4):284–294.
- Gottlieb B, Trifiro MA. Androgen insensitivity syndrome. Gene Reviews (Internet). 2017 May.
- Leinung MC, Urizar MF, Patel N, et al. Endocrine treatment of transsexual persons: Extensive personal experience. Endocr Pract. 2013 Jul–Aug;19(4):644–650.
- 2016 plastic surgery statistics report. American Society of Plastic Surgeons.