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
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Explore This IssueJune 2018
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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.”