Most cancer doctors don't know enough about LGBTQ patient care, study finds

By Ashley Welch

/ CBS News

Gender – The Space Between

Cancer cells don't discriminate. But when a patient who identifies as lesbian, gay, bisexual, transgender, or queer/questioning (LGBTQ) is diagnosed, they may have health needs or concerns their doctors aren't expecting.

When it comes to cancer care, a new study finds many doctors are lacking in knowledge about treating members of the .

The research, published in the Journal of Clinical Oncology, found that the majority of oncologists say they're comfortable treating individuals who identify as LGBTQ. But only half of them expressed confidence in their knowledge of these patients' health needs.

"There's both overt and covert discrimination that happens that we've heard again and again especially for transgender patients but across the LBGTQ spectrum," study author Megan Sutter, PhD, postdoctoral research fellow at NYU Langone Health, told CBS News. "With this research, we're really interested in looking at how discrimination affects not only patient health but also how can we intervene at the provider level to have an impact on quality of care."

The researchers surveyed 450 oncologists from the 45 National Cancer Institute (NCI) designated cancer centers in the United States.

"These are the best of the best. If things are not happening at NCI centers, they're probably not happening at smaller community centers," said Gwendolyn Quinn, PhD, professor of population health and obstetrics and gynecology at NYU Langone Health and also an author of the study.

The questions were designed to assess the doctors' knowledge, attitudes, behaviors, and willingness to be educated about LGBTQ cancer patients. Most of the oncologists surveyed were heterosexual males.

Health needs of LGBTQ patients

Care for LGBTQ patients was incorporated in med school curriculums around 2010, Quinn explained. "If you went to school before then, you probably didn't get a lot of that training. And even still if you did get it, you got it as a med student before you identified your subspecialty as oncology," she said.

The results of the study revealed that a big gap in care comes from doctors not being able to appropriately assess cancer risk for members of the LGBTQ community.

For example, the survey asked doctors if they were aware that the LGBTQ population is, overall, more likely to spend time in the sun, use tobacco, and have substance abuse issues. The doctors were also asked whether or not women who have never had sex with a man are still at risk for HPV, or the human papillomavirus, which is linked to several types of cancer.

"The answer to these questions is that they're true, but many of the doctors in the survey didn't think that," Quinn said.

The research also found a lack of understanding of some of the personal and family issues LGBTQ patients may face.

"Some of them focus on end-of-life care issues," Quinn said. "People who are members of this community tend to sometimes be estranged from family of origin. There are all different types of patterns for who may be caregivers or health surrogates. It may be someone who's formally a married partner or a friend."

She said it's also important for doctors not to assume that patients of child-bearing age are not interested in fertility preservation methods because they are LGBTQ. They may still want to have children.

Transgender man who gave birth tackles stigma through social media

Gaps in transgender care

While 83 percent of oncologists surveyed said they were comfortable treating transgender individuals, only 37 percent reported feeling that they knew enough to do so.

Previous research has found that transgender people often postpone medical care due to discrimination or concern about how they'll be treated, and many say they've needed to teach their health care providers about transgender care. Some have even been refused treatment because of their transgender or gender non-conforming status.

A 2015 report from the New York Academy of Medicine on access to quality health care for transgender people describes how harrowing the experience can be. "We've gotten calls from people who have gotten thrown out of gynecologists' offices because they'll say we don't see men… then they have to explain that they have female anatomy and the doctors are so uninformed," a trans woman and LGBTQ care provider said.

Medical experts say it's always important to ask a patient how they would like to be addressed and to use the proper pronouns to which he or she identifies.

More training needed

As a result of their findings, the researchers recommend cancer centers create a safe environment for patients to disclose their sexual orientation and gender identity, as well as establish protocols for treating LGBTQ cancer patients.

"It's not a patient issue. We should not expect people who identify as LGBTQ to train us about what their needs are," Quinn said. "It is our obligation as institutions and providers of care to figure out how we can best serve them."

Although the survey revealed most oncologists lack awareness in key health issues facing LGBTQ patients, it also found a high interest in receiving more education on the subject.

Sutter says she hopes this can happen in consultation with the LGBTQ community. "We want to make sure we're not dictating what we think is best for them but rather make sure we're doing it as partners and equals," she said.

Finally, the study authors say workers at every level of the health care industry should receive training to provide better care for LGBTQ patients.

"It's one thing to train practicing oncologists, and they're obviously the place to start, but members of the LGBTQ community are not going to get great care if the whole team and the institution are also not trained," Quinn said. "There needs to be policies at the institution level from nurses to intake to schedulers, all workers need to have this cultural competency in order for the patient to have a good experience."

First published on January 16, 2019

© 2019 CBS Interactive Inc. All Rights Reserved.

Ashley Welch

Ashley Welch covers health and wellness for CBSNews.com

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