Article In Brief
An AAN member survey on preparedness to treat sexual and gender minorities uncovered gaps in understanding their neurologic needs. Members of the task force that conducted the survey suggest areas for more attention and research.
A new survey of AAN members highlights important gaps in their ability to provide appropriate care for sexual and gender minority (SGM) patients—those who identify as part of the lesbian, gay, bisexual, transgender, queer, or questioning (LBGTQ+) spectrum.
The survey, which was published ahead of print in the June 14 online edition of Neurology, found most neurologists are aware of barriers to care faced by SGM individuals. Indeed, nearly all of those surveyed (84 percent) indicated that they understood that sexual minority individuals experience disproportionate levels of physical and mental health problems, and more than half were aware of national (64 percent) and local/community (60 percent) barriers that may inhibit SGM people from accessing health care services.
Most respondents (73 percent) felt competent to assess and examine an SGM patient in comparison to a patient who is cisgender, meaning their sense of identity or gender corresponds to their birth sex. But only one-third of neurologists surveyed would tailor neurologic care based on the SGM identity of a patient, and nearly half (43 percent) believe that sexual orientation and gender identity have no bearing on neurologic illness.
“It's a situation in which folks don't know what they don't know,” said the lead author of the Neurology report, Holly E. Hinson, MD, MACR, FAAN, associate professor of neurology, neurocritical care, and emergency medicine at Oregon Health & Science University. “Most neurologists feel comfortable doing what neurologists do well, taking the history and examining the patient. But it is not necessarily stressed in neurology residencies or in continuing education that there are direct links between identifying as a sexual or gender minority person and neurologic issues.”
Identifying Gaps in Knowledge
More than 13 percent of the 1,000 neurologists queried for the survey, conducted by the AAN's LGBTQ+ Survey Task Force, responded. The majority of those surveyed (88 percent) identified themselves as being heterosexual/straight; only 14 (approximately 10 percent) identified themselves as belonging to a sexual or gender minority, and of those 14, only nine were “out” at work. No respondents identified themselves as transgender.
“We really noticed gaps when we queried people's knowledge base on specific topics,” said Dr. Hinson. “Many neurologists are not necessarily aware of specific things that could be an issue. For example, patients who are taking gender-affirming hormones who also experience seizures or epilepsy could have the levels of their anti-epileptic drugs affected by their gender-affirming hormones. If a person with epilepsy starts a gender-affirming transition and begins taking those hormones, that could lead to their seizures becoming suddenly uncontrolled.”
Recent research has also suggested vulnerabilities for individuals who are transgender in regard to stroke. A case series involving eight transgender women admitted for stroke at San Francisco General Hospital, published in Neurologist in March, revealed a disproportionate amount of alternative stroke risk factors including stimulant use, tobacco use, hepatitis C, HIV, and prior stroke or transient ischemic attack. Six of the eight patients had used estradiol (either oral or injection forms) or conjugated estrogen as part of gender-affirming treatment at the time of stroke; only two were prescribed their hormone therapy on discharge.
“Another issue of which many neurologists may not be aware is the fact that some of the antiretroviral drugs administered to treat HIV can be associated with neuropathy,” said Dr. Hinson. “And while we don't yet have long enough experience with the pre-exposure prophylaxis (PrEP) regimens used to prevent HIV infection in individuals at increased risk, some components within PrEP could potentially be linked with neuropathy as well. This is an area in need of further study.”
Patients who are SGM may also face discrimination in accessing post-acute services, Dr. Hinson added. “Despite the fact that stigma has improved, it is not absent in society, and there are no federal protections in employment or housing for sexual and gender minorities. You can legally be fired or evicted for identifying as gay or transgender, which can be a particular issue for elderly patients in need of assisted living or rehabilitation. This is very important for the neurologist overseeing such a patient's care to inquire about.”
How SGM Status Affects Neurologic Needs
The survey's findings resonated strongly for Mackenzie Lerario, MD, medical director of the Mobile Stroke Treatment Unit Program at New York-Presbyterian Hospital and Weill Cornell Medicine, as both a neurologist and a SGM individual who grew up with Tourette syndrome and migraines. In May of 2019, Dr. Lerario came out as a transgender woman.
“I've seen neurologic care as it affects SGM individuals from both sides of the spectrum,” she said. “Overall, I found the [survey] results rather alarming for several reasons.”
The first, she said, is neurologists' over-estimation of their comfort level and skill set in providing care for sexual and gender minorities. “The majority of the respondents were older, cisgender, heterosexual men, and while it's quite possible that they do want and intend to treat sexual and gender minority patients with an equally high level of care as other patients, there are clearly significant knowledge gaps. The fact that only 40 percent of respondents said that being trans or another sexual minority would influence someone's neurologic care shows how much they're over-estimating their knowledge base.”
When she graduated from the University of Pennsylvania in 2010, Dr. Lerario had seen no trans patients and logged zero hours of training in transgender health care. “There was no review or testing of LGBTQ+ neurologic issues in any of the board or other certification examinations that I took to become a board-certified neurologist or vascular neurologist,” she said. “The neurology text that I have in my office does not make any mention of LGBTQ+ patients and their needs. But as a stroke specialist, one of the hardest discussions I've had to have has been with transgender patients who can no longer take hormone therapy because they've had a stroke or other cardiovascular event. To some people that can be like a death sentence.”
Hormone therapy can also affect multiple other subspecialty medical issues, many of which have a neurologic component, such as migraine treatment. “I used to get frequent migraines, but the pattern of my migraines has changed since I started oral supplementation with estradiol,” Dr. Lerario said.
For most of these issues, there is a paucity of relevant evidence. The AAN survey authors noted that much of the data on questions such as the relationship between gender-affirming hormones and conditions such as epilepsy, migraines, stroke and other cerebrovascular events comes from case series.
“There isn't much in terms of strong evidence, for example, for what the best approach is to managing a trans patient who has experienced a stroke,” Dr. Lerario said. “Usually the patient will stop hormone therapy temporarily, and what we tend to do is prescribe the patch over either injections or oral pills. There is some expert opinion that this may lower the risk of cardiovascular events, but there's not much evidence that this is necessarily the case.”
Another problem the survey spotlights is the lack of practitioners who are transgender in the AAN, or at least an unwillingness to openly identify themselves to the AAN. “In the general population, about 1 percent of people identify as transgender, but in this group there wasn't a single participant who was trans. That's either because there is not equity in terms of how many trans people are becoming neurologists, or they're out there and they're terrified of participating in a survey like this,” Dr. Lerario said.
Dr. Lerario knows that the latter may well be the case. Although she did not receive the survey herself, she said that had she received it when it was distributed last year, she would not have answered it—or at least, not honestly. “At that point I would have been scared that I would lose my job, or that the AAN might have held it against me,” she said. “I now doubt that would have happened, and realize it was an unfounded fear, but at the time it would have prevented me from being an honest participant in the survey.”
The Imperative for Education and Research
Education and scholarship are urgently needed to combat these gaps in knowledge and data, the survey's authors agreed—efforts that should be taking place at individual institutions as well as more broadly across the Academy.
“These efforts must be multi-pronged,” said study co-author Nicole Rosendale, MD, assistant professor of neurology at the University of California, San Francisco (UCSF). “The first step is education at the medical school and residency level. LGBTQ+ health is not prevalent in the standard medical training curricula. This is starting to improve, but there is still a dearth of consistent instruction, particularly in clinical rotations, on sexual and gender minority health issues, mental health care for these individuals, and broader issues such as how to be inclusive in one's language.”
The UCSF neurology residency, for example, includes an annual talk on sexual and gender health in neurology. Systemwide, the institution has a specific faculty member tasked with surveying the entirety of the medical school curriculum for opportunities to integrate topics in LGBTQ+ health, rather than simply tacking on an extra module wherever it might fit.
In addition to augmenting existing undergraduate and graduate medical training in these issues, the Task Force recommends increased continuing medical education programming for neurologists already in practice. “...[I]t is encouraging that most respondents in our survey were interested in cultural competency offerings to bridge some of the gaps that were self-identified in the survey,” they wrote. “Moreover, 30% of respondents reported learning new information merely by participating in the survey exercise. Taken together, these findings support an unmet need for continuing medical education offerings on SGM health in neurology.”
The AAN's LGBTQI Section, established in 2017 and open to all Academy members with an interest in this area, has introduced a cultural competency course offered each year at the AAN Annual Meeting. In this two-hour class, meeting attendees can learn basic terminology, hear examples and case studies, and learn more about how to make one's clinic or practice more open and welcoming to patients who identify in this spectrum. The group is also developing specific content for the AAN's website, and Dr. Hinson said that in the future they hope to provide webinars and other self-paced learning content. In addition, Dr. Lerario suggests incorporating coverage of LGBTQI+ neurologic needs in Continuum and other AAN journals could help educate practicing neurologists.
For individual providers as well as practices, departments, and institutions, another excellent resource is the National LGBT Health Education Center of the Fenway Institute, Dr. Rosendale said. Its interactive online learning modules include topics such as staff training and effective communication for affirming LGBTQ+ people, as well as specific health issues such as caring for LGBTQ+ youth and older adults, improving care for transgender people, and reducing HIV incidence.
How to Create a Culture Change
Dr. Rosendale added that leaders in individual departments of neurology, or private group or individual practices, who have influence over the culture of their department or practice should assess how their group treats sexual and gender minorities. “For example, how frequently are communications such as patient letters and forms gendered, and gendered as a binary? Something seemingly as innocuous as an email addressed to ‘ladies and gentlemen’ is non-inclusive,” she says. “When I speak in public, many folks when they see my wedding ring will ask, ‘What does your husband do?’ These little interactions as people go through the day can be wearing and a signal of a lack of inclusivity in a culture.”
Dr. Hinson suggests reviewing the following processes in your practice:
- The literature provided by your clinic. “Work to ensure that the subjects pictured and described portray a broad range of presentations and identities—ethnic, racial, and sexual and gender minorities,” she said. “This communicates a welcoming atmosphere.”
- Forms and electronic records. “Historically our forms and electronic medical records have been limited in their ability to capture sexual orientation and gender identity [SOGI] data,” she said. “This information is critical not only to having complete information about individual patients, but our ability to do research. But now some of the major EMRs are capturing SOGI data, which is phenomenal and can assist clinic staff in using correct names and pronouns.” The Fenway Institute's resources also include a “focus on forms and policy” guide that covers affirming nomenclature.
- Education of front desk staff and all staff members who have patient contact. “Focus on asking open-ended questions that don't make assumptions,” Dr. Hinson said. “Instead of asking ‘What does your husband/wife do?’ ask ‘Do you have a partner,’ or ‘Whom do you live with?’” Encouraging staff to display their own pronouns prominently is another sign of affirmation and safety; for example, staff badges at her institution now display the wearer's pronouns as a part of standard protocol.
“Even though we have legal protections for trans people in New York State, my biggest fear in the coming out process was that I would lose my job. I've heard stories of people being fired, forced out of positions, or demoted because they came out as trans at work. But Matt had my back from the beginning.”
—DR. MACKENZIE LERARIO
“Overall, a culture of respect needs to be given to this community, which has been historically marginalized and disrespected by society at large,” said Dr. Lerario. “Accommodations are absolutely essential to their well-being. Presenting as male up until earlier this year, I heard physicians—including neurologists—complain about things like having to ask about pronouns and preferred names and include that information in the EMR. Those sorts of things, for a person who is already fragile, could contribute to self-harm or suicide.”
Department chairs and other institutional or practice leaders should set a clear example for a program's approach both to treating SGM patients, and to creating an accepting and welcoming environment for SGM clinicians and staff. Dr. Lerario praised Matthew E. Fink, MD, FAAN, chairman of neurology at Weill Cornell Medicine and neurologist-in-chief at New York-Presbyterian Hospital/Weill Cornell Medical Center, and Jennings Aske, New York-Presbyterian senior vice president and chief information security officer, for setting just such a tone when she made her transition.
“Even though we have legal protections for trans people in New York State, my biggest fear in the coming out process was that I would lose my job,” said Dr. Lerario. “I've heard stories of people being fired, forced out of positions, or demoted because they came out as trans at work. But Matt had my back from the beginning. I gave him a book by trans author Jennifer Finney Boylan, and he read it immediately and told me he wanted to understand my experience. Because of his stance, I felt more comfortable telling all the senior leadership, and the outpouring of support was incredible. I have a whole email chain with something like 80 people sharing their respect and appreciation for my coming out. A week or two later, I began coming into work dressing and expressing myself as a woman, because that's who I am.”
Aske then approached Dr. Lerario and offered to help change all her online content at all affiliated institutions to reflect her new identity. He assigned a manager in the medical staff office to help ensure that this was an expedited process.
“They did it quickly because they knew it would affect me negatively if they didn't, and because they wanted to set a standard for the next people in our health system who come out as trans or nonbinary,” she said. “We are now working together to reach out on a national level to set standards for helping health care professionals identify themselves appropriately in online content. They want to write a playbook.”
Physical accommodations are also important for both staff and patients. A number of hospitals and medical schools, including Lurie Children's Hospital of Chicago, Brown University's Alpert Medical School, and the Children's Hospital of Philadelphia, have established gender-inclusive restrooms. “These are small accommodations that need to be championed by allies, including neurologists not in the LGBTQ+ community. Once you meet someone and learn about their challenges in day to day life—how they've been discriminated against just getting to your clinic door—you can better understand their needs. Even if it doesn't change how you treat them neurologically, it will always change how you treat them as a person.”
The LGBTQ+ Task Force also recommends that both institutional leaders and specialty societies such as the AAN promote initiatives to change health system and specialty practices around systematic collection of SOGI data.
“We have a dearth of information about what the disparities are within neurology, partly because we just don't have data sources,” said Dr. Hinson. “These questions are not routinely asked on population-based surveys. While sexual orientation questions are beginning to be included, gender identity questions are still mostly absent. That lack of knowledge leads to lack of education. We can't teach too many specifics if we don't have the data. When we have that, we can look at disparities and figure out how this community needs better neurologic care, and develop targeted interventions to address those disparities. But we're only going to get that if we ask—and ask in a systematic way, so that we're not assuming certain individuals need to be asked and others do not.”
Creating an environment where SGM patients and staff feel welcome and affirmed, and have their needs met, contributes to better outcomes for everyone. “I spent three years with a gender therapist coming up with a transition plan and figuring out exactly who I am,” said Dr. Lerario. “For 35 years I was not living an authentic life. Now I get to be the person I was meant to be. It's fantastic seeing how much I can impact patients in our mobile stroke program, and how much better of a doctor, caregiver, and leader I can be now that I'm being authentic.”
Dr. Hinson had no disclosures. Dr. Rosendale received an honorarium to present at the 2018 AAN Annual Meeting for the AAN LGBTQI Section.