Opinion

VIEWPOINT

Nicole Rosendale, MD University of California– San Francisco, San Francisco. S. Andrew Josephson, MD University of California– San Francisco, San Francisco.

The Importance of Lesbian, Gay, Bisexual, and Transgender Health in Neurology What’s in a Name? Health care disparities in neurological conditions have become increasingly apparent during the past decade, principally focusing on racial and ethnic disparities. However, disparities involving the lesbian, gay, bisexual, and transgender (LGBT) community continue to be understudied in medicine, including neurology. Although the significance of an LGBT identity frequently goes unrecognized in neurological care, this community faces unique challenges and potential disparities that are vital for neurologists to understand to provide thorough and culturally competent care. Current figures estimate that approximately 9 million Americans, 3.5% of the adult population, identify as LGBT. An additional 19 million American individuals (8.2%) report engaging in same-sex sexual behavior and 25.6 million American individuals (11%) acknowledge same-sex attraction.1 Despite this prevalence, many physicians remain unaware of LGBT health issues and may even practice behaviors that discriminate against LGBT individuals. In a 2009 survey, 56% of lesbian, gay, and bisexual respondents and 70% of transgender respondents reported at least 1 instance in which they experienced discrimination in the health care setting, such as being refused needed care, being blamed for their health status, or having health care professionals refuse to touch them, use excessive precautions, use abusive or harsh language, or act physically rough or abusive. This survey also found that 29% of lesbian, gay, and bisexual individuals and 73% of transgender individuals were hesitant to share their sexual orientation with their physician for fear of this discrimination.2 Creating an environment where LGBT patients feel comfortable disclosing their sexual orientation and gender identity is crucial to providing competent medical care and understanding unique health disparities.

The Current State of Research

Corresponding Author: Nicole Rosendale, MD, University of California– San Francisco, 505 Parnassus Ave, M798, Box 0114, San Francisco, CA 94143 (nicole.rosendale @ucsf.edu). jamaneurology.com

The 2011 Institute of Medicine report on LGBT health states that, “[a]lthough a modest body of knowledge on LGBT health has been developed, these populations, stigmatized as sexual and gender minorities, have been the subject of relatively little health research.”3 Given the lack of research in neurology on this topic, questions remain regarding health care concerns of the LGBT community relevant to neurological care. Human immunodeficiency virus is the most common association with LGBT health. While it is true that rates of human immunodeficiency virus infection remain relatively high in the gay and bisexual male population, health disparities extend well beyond human im-

munodeficiency virus infection rates. Because of the lack of LGBT-specific research in neurology, it is unclear if rates of specific neurological diseases are in fact higher in the LGBT community despite known disparities involving risk factors for these disorders. For example, lesbians are more likely to be overweight and obese compared with their heterosexual counterparts, a difference that begins as early as adolescence.4 Smoking prevalence for lesbian and bisexual women are also significantly higher than rates in the general population, as are those for gay and bisexual men, likely increasing rates of cerebrovascular disease. Individuals who identify as LGBT have higher rates of substance use disorders, which can increase the risk of stroke, human immunodeficiency virus– related conditions, and poorly controlled epilepsy.5 There are also potentially underrecognized risks from known effects of medications taken more commonly within the transgender community. Transgender women taking estrogen may be at higher risk for stroke owing to hypercoagulable effects. Exogenous estrogen may make epilepsy and migraines more challenging to control. Transgender men taking testosterone may have increased rates of hyperlipidemia, leading to higher rates of stroke. The use of exogenous hormones in general can also have an effect on thyroid function, placing transgender individuals at a higher risk for cognitive decline, seizures, tremors, and headache. While interventions have typically focused on modifying these risk factors in all populations, neurologists need to understand the factors driving these disparities and be trained in the proper language to use in discussing LGBT issues if they are to be effective in their counseling of these patients. For example, the fundamental significance of exogenous estrogen for a transgender woman is vastly different than for a postmenopausal woman. Many of these disparities are linked to minority stress and how LGBT identity intersects with other aspects of identity, such as race/ethnicity or socioeconomic status.6 Studies have shown that compliance with recommended therapy correlates with a patient’s trust in the physician.7 In a community where there is a potent legacy of discrimination and pathologization of identity, developing trust can be challenging. Training neurologists to use gender-neutral nonheteronormative language signals a level of awareness and acceptance that can make large strides in advancing the patientphysician alliance and improving health outcomes. For example, when first meeting a patient, asking for the patient’s preferred name indicates a familiarity with one of the many barriers transgender patients experi(Reprinted) JAMA Neurology Published online June 29, 2015

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Opinion Viewpoint

Table. Proposed Future Research Directions Research Question

Risk Factor

Do LGBT individuals have less access to specialist care, including neurology?

Less access to primary care

Is there a higher rate of stroke in the LGBT community?

Higher rates of smoking, obesity, etc

Are stroke outcomes different for LGBT individuals?

Higher rates of smoking, obesity, etc

Given the correlation of cerebrovascular risk factors with Alzheimer pathology, is the rate of dementia higher in LGBT individuals?

Higher rates of smoking, obesity, etc

Is migraine more prevalent or more difficult to treat in transgender women taking exogenous estrogen?

Exogenous hormones

Does exogenous testosterone increase transgender men’s risk of stroke?

Exogenous hormones

Is the response to epilepsy treatment different in transgender women taking exogenous estrogen? Is it different in transgender men taking exogenous testosterone?

Exogenous hormones

Is the incidence of thyroid-related neurological disorders higher in the transgender community?

Exogenous hormones

Is the incidence of nonepileptic seizures higher in the LGBT community?

Higher rates of anxiety/depression

For LGBT individuals with neurodegenerative conditions, in what way do their experiences differ from heterosexual cisgendera individuals?

Fewer LGBT-specific elderly services

Do LGBT individuals participate in support groups for neurological conditions? If so, do they garner similar benefit from these groups compared with heterosexual cisgendera individuals?

Fear of discrimination from the medical community

Abbreviation: LGBT, lesbian, gay, bisexual, and transgender. a

An individual whose sex at birth and self-identified gender are congruent.

ence in the health care setting. Similarly, using terms like partner or significant other rather than boyfriend/husband or girlfriend/ wife allows the patient to discuss his or her sexual behavior in an open nonjudgmental environment.

Future Directions Undertaking LGBT research is not without its challenges. The recruitment of appropriate sample sizes can become problematic, particularly in communities in which self-identifying imparts personal safety risks or discrimination for the study participants. Decisions must be made as to how members of the community will be iden-

LGBT People and People With HIV. New York, NY: Lambda Legal; 2010.

ARTICLE INFORMATION Published Online: June 29, 2015. doi:10.1001/jamaneurol.2015.0226. Conflict of Interest Disclosures: Dr Josephson receives personal compensation as editor in chief of Journal Watch Neurology and in an editorial capacity for Continuum Audio. No other disclosures were reported. REFERENCES 1. Gates GJ. How Many People Are Lesbian, Gay, Bisexual and Transgender? Los Angeles, CA: The Williams Institute, UCLA School of Law; 2011. 2. Lambda Legal. When Health Care Isn’t Caring: Lambda Legal’s Survey of Discrimination Against

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tified in research, either by sexual behavior or self-identity. Consistent identity methods need to be used to facilitate comparisons between studies and communities. The LGBT community deserves the same attention within disparities research as other underserved populations and the field remains wide open for exploration in neurology. A number of important questions need to be urgently addressed (Table). As neurologists, we must understand the multitude of ways our patients’ sexual orientations and gender identities affect their relationships to us and the medical community at large so that we can continue to advocate for true equitable health for all our patients.

3. Institute of Medicine. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: The National Academies Press; 2011. 4. Austin SB, Ziyadeh NJ, Corliss HL, et al. Sexual orientation disparities in weight status in adolescence: findings from a prospective study. Obesity (Silver Spring). 2009;17(9):1776-1782.

6. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674-697. 7. Cuffee YL, Hargraves JL, Rosal M, et al. Reported racial discrimination, trust in physicians, and medication adherence among inner-city African Americans with hypertension. Am J Public Health. 2013;103(11):e55-e62.

5. Leach JP, Mohanraj R, Borland W. Alcohol and drugs in epilepsy: pathophysiology, presentation, possibilities, and prevention. Epilepsia. 2012;53(suppl 4):48-57.

JAMA Neurology Published online June 29, 2015 (Reprinted)

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The Importance of Lesbian, Gay, Bisexual, and Transgender Health in Neurology: What's in a Name?

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