Guidelines and Research Lacking for LGBTQ Patients, Study Finds

People who are gay, bisexual, or transgender with Parkinson’s disease or other movement disorders can be reluctant to disclose their sexual or gender identities for fear of being denied treatment or enrollment in clinical trials, a study found.

Research is limited into this growing patient group, and best practice guidelines are lacking, despite an awareness of differences in disease risk factors, including the use of gender-affirming hormones that could affect both motor and non-motor symptoms, its researchers wrote.

“There is a disparity in care among those in the sexual and gender minorities,” Chi-Ying Roy Lin, MD, a neurologist at Baylor College of Medicine, a Parkinson’s Foundation Center of Excellence, said in a release published by the foundation. “I have had patients who are reluctant to reveal their identity because of fear they will get denied healthcare.”

Lin, who is the first author of the study “Expanding Sexual and Gender Minority Research In Movement Disorders: More Than Awareness and Acceptance,” published in the journal Parkinsonism & Related Disorders, advocates for people with Parkinson’s who are lesbian, gay, bisexual, transgender, queer and/or questioning. This community is commonly referred to as LGBTQ or LGBTQ+.

Most medical research addressing sexual or gender identity and movement disorders takes place in the context of infection with the human immunodeficiency virus (HIV). Studies into Parkinson’s or parkinsonism within this group are few, leaving many clinical and epidemiological research questions unanswered for “a community whose patient population is on the rise,” the researchers noted.

“Movement disorders is one of the least researched areas in the LGBTQ+ neuroscience field,” Lin said.

While a person’s biological sex is assigned before birth — male or female — gender identity can change. Gender refers to a person’s social identity as male, female, transgender, or non-binary.

The goal of the study, conducted with colleagues at the University of California San Francisco and the University of Massachusetts Memorial Medical Center, was to highlight the most urgent issues related to LGBTQ people with Parkinson’s and other movement disorders.

First, most medical records list male or female sex, but not gender identity, which “continues to limit our research,” Lin said. Knowing if a Parkinson’s patient identifies as LGBTQ could help professionals in better treating movement and mood disorders.

Parkinson’s is characterized by the loss of nerve cells that control body movement. This can lead to motor difficulties as well as sleep problems, cognitive issues, slurred speech, and mood disorders such as anxiety and depression. Patients, as a result, often experience higher rates of social isolation.

Social isolation is also known to be more common among members of the LGBTQ community than the public at large. A sense of isolation can be greater in a person who is LGBTQ with Parkinson’s for this reason, worsening non-motor symptoms such as mood disorders.

Gender-affirming hormones, such as testosterone and estrogen, are also prescribed to help match a transgender person’s body with their identity. While studies suggest testosterone does not affect Parkinson’s symptoms, the influence of estrogen on Parkinson’s is inconclusive. Some studies show protective benefits in terms of an easing of certain symptoms. Others report more motor fluctuations in women with Parkinson’s than men, raising questions about estrogen as potentially protective.

“It is possible that trans women with Parkinson’s who take estrogen may see better or worse motor symptoms, which requires future research to tell us,” Lin said. “This is particularly important, as counseling about the stopping or altering of gender-affirming hormone for a transgender person, if necessary, is drastically different from that for postmenopausal or contraception purpose, considering the medical necessity of gender-affirming hormone to maintain mental health and life quality.”

Additionally, many people in a same-sex marriage or who identify as transgender are not comfortable speaking to their doctor about sexual or gender identity due to ongoing LGBTQ stigma and discrimination.

“We need to create a safe environment in healthcare institutions to disclose sexual orientation and gender identity to better impact care and access to resources,” the researchers wrote.

Older adults within the LGBTQ community can be especially vulnerable. “It is not uncommon to see higher rates of violence or verbal abuse in nursing homes aimed at LGBTQ residents,” Lin said.

To date, there are no established guidelines for LGBTQ patient care for use by Parkinson’s-related multidisciplinary healthcare teams or treatment facilities, the study noted. Greater advocacy and policies are needed to address the care difficulties experienced by members of this community, and to improve treatment and care for those with Parkinson’s.

“There are currently no guidelines at national or state level to help provide better care for the LGBTQ+ community,” Lin said. “There is a critical need for literature and best practices.”

Guideline recommendations included educating healthcare workers about LGBTQ-related terminology, providing lists of LGBTQ-friendly providers, and establishing approaches that help encourage LGBTQ members to speak more comfortably with their doctors and nurses. Lin and his colleagues also noted that more inclusive support groups are needed within organizations and institutions.

When asked what advice he had for the LGBTQ Parkinson’s community, he said, “Do not be afraid to reveal your identity and community. I feel people in the medical community are relatively open-minded.

“If you are uncomfortable with your current specialist, reach out to other providers who may be able to give LGBTQ+ customized care,” added Lin. “Telemedicine allows most people to find the right provider now. Also, try to be active in participating in clinical research and trials. Don’t be afraid to reveal who you are.”