Cancer Care Has A Long Way To Go To Meet LGBTQ Patients' Needs

LGBTQ patients have unique risk factors for cancer and oncologists admit they don’t know enough about them, a new national survey reveals.
Sharon Pruitt / EyeEm via Getty Images

The LGBTQ population’s health care needs are often different from those of cis-hetero patients, including when it comes to cancer detection and treatment. Sexual and gender minority individuals are at higher risk for certain cancers, and barriers to health care for this group are well-documented — but even when these patients make it to the doctor’s office, physicians may be unprepared to meet their needs.

A new national survey of oncologists found that most providers feel they don’t know enough about the specific health needs of lesbian, gay, bisexual and transgender patients.

Asked about six aspects of cancer care and prevention among LGBTQ patients — including the effects of screening interventions, lifestyle risk factors and access to health insurance — many of the 149 oncologists who responded to the survey reported not knowing the facts or not being confident in their knowledge. All of the doctors work at National Cancer Institute-designated cancer centers.

“I continue to be surprised at how low the knowledge is,” Dr. Gwendolyn Quinn, one of the study’s authors and a professor of population health at NYU Langone Health, told HuffPost.

The new survey was an expansion of a pilot study Quinn and her collaborators conducted in Florida and published in 2017, in which less than half of oncologists who participated correctly answered knowledge questions related to LGBTQ patients.

““I continue to be surprised at how low the knowledge is."”

- Dr. Gwendolyn Quinn, one of the study’s authors

The new survey asked a nationally representative group of oncologists to review a similar set of questions about LGBTQ cancer care and say whether they thought the statements were true (“Agree,” “Strongly agree”), believed they were false (“Disagree,” “Strongly disagree”) or admit that they weren’t sure (“Neutral/do not know”).

A high percentage of providers responded “Neutral/do not know” to most questions ― including whether regular anal cancer screening for gay and bisexual men could increase life expectancy (47.7 percent), if there was a higher prevalence of smoking among LGBTQ individuals (67.1 percent), and whether transgender patients are less likely to have health insurance (57.7 percent).

Quinn said for this study, participants were asked about confidence in their knowledge of LGBTQ patients’ health needs at the beginning of the survey and then again after the knowledge questions. At the start of the survey, 53 percent of oncologists felt confident regarding lesbian, gay and bisexual patients’ health needs and 37 percent felt confident regarding transgender patients’ health needs. After responding to the questions, the physicians’ confidence dropped to 39 percent and 19.5 percent, respectively.

As predicted, “the survey became an intervention of sorts to help physicians realize what they didn’t know,” said Quinn.

“I think it’s very sad if medical providers don’t even understand some of these basic points,” Dr. NFN Scout, deputy director of the National LGBT Cancer Network and an expert in transgender health, told HuffPost. “But of course, it’s not taught in schools. On average, medical schools provide less than an hour of information on the LGBTQ population. So how can we expect this to change until the systems that are a part of the medical world start to change?”

Meeting The Needs Of LGBTQ Patients

Differences in the risks and needs of LGBTQ cancer patients largely stem from social and economic challenges and lifestyle factors. Data show queer adults in the U.S. are less likely to have jobs and health insurance. But even with health insurance, lesbian, gay and bisexual adults are more likely to delay medical care compared to their heterosexual counterparts — a fact that is particularly worrisome given the crucial importance of early cancer detection for treatment and survival.

“We’ve seen this again and again, that exposure to discrimination or even fear of discrimination from health care providers and health care systems can actually lead to health care avoidance,” said Dr. Megan Sutter, another author on the study and an OBGYN at NYU’s School of medicine. In the case of cancer treatment, if you’re not screening appropriately, getting preventive care and are also delaying potential curative treatment, it can have detrimental effects.”

Barriers to health care are even greater for transgender Americans, who have even higher rates of poverty, unemployment, homelessness and poor health linked to pervasive discrimination and a general lack of legal protections.

“Out of the LGBTQ population, the trans population often experiences the most extreme health discrimination, the most extreme barriers to care, the most extreme level of societal exclusion,” Scout, who identifies as transgender, said. “We are often poor; we are often suicidal. We are often struggling to get work and certainly struggling to get health care.”

There are also behavioral and lifestyle factors that increase LGBTQ individuals’ risk for certain cancers, according to Quinn.

“For example, women who don’t ever have a child have increased risk for gynecologic cancer and women who identify as lesbian are less likely to have a child, though certainly many of them do,” said Quinn, who’s done separate research into how some cancers disproportionately impact LGBTQ individuals. “Also, people who engage in receptive anal intercourse have increased risk for HPV-related anal cancer.”

“If someone who is heterosexual and cisgender has those same behaviors, they have those same risks,” she added.

Cigarette smoking among LGBTQ individuals in the U.S. is higher than among heterosexual Americans ― leaving the population at higher risk for many forms of cancer, including lung cancer, cervical cancer and colon cancer. Higher smoking rates in the community are likely due to stigma-related stress, targeted marketing by the tobacco industry and lack of access to tobacco treatment, according to the American Lung Association.

A participant smokes a cigarette at the LA Pride Music Festival and Parade 2017 on June 10, 2017 in West Hollywood, California. (Photo by Chelsea Guglielmino/Getty Images)
A participant smokes a cigarette at the LA Pride Music Festival and Parade 2017 on June 10, 2017 in West Hollywood, California. (Photo by Chelsea Guglielmino/Getty Images)
Chelsea Guglielmino via Getty Images

Changing The System

Scout said one big step toward understanding the LGBTQ community’s cancer risks and meeting their needs is for doctors to collect data on the sexual orientation and gender identity of their patients, something he noted is recommended by the American Society of Clinical Oncology (ASCO).

“Unfortunately, providers rarely collect sexual and gender minority data in health records, so that means that we don’t have cancer-related data for our population,” he explained.

Even though most physicians who responded to the survey said they felt it was important to know the sexual orientation and gender identity of their patients, 63 percent said their institution’s intake forms did not inquire about a patient’s sexual orientation, 54 percent said they did not inquire about a patient’s sex at birth, and 55 percent did not inquire about current gender identity.

Quinn said many providers insisted they would treat all their patients the same regardless of how they identified. This is a nice sentiment in theory, she said, but in practice, doctors should be prepared to tailor prevention discussions and treatment options to LGBTQ individuals’ specific needs.

Referring to a section of the survey from which results have not been published, Quinn said, “Many physicians would respond ‘I treat all my patients the same, I give them all good care, so I don’t need to know this.’ So we have a duty to help physicians understand why they need to know the sexual orientation and gender identity of their patient. And what they can do about it once they have that information.”

“I would only hope that evidence like this can help move people to take steps to remedy the situation,” Scout said, in reference to the survey’s findings. “I don’t think anyone is proud of offering substandard care to one element of the population.”

Researchers did find one bright spot: Roughly 70 percent of respondents said they were interested in receiving education regarding lesbian, gay, bisexual, transgender and queer patients’ unique health needs.

But the solution requires more than the efforts of individual providers to improve their own practices, Scout argued, underscoring the need for reform in the medical community at large.

“A rainbow sticker in your office doesn’t say ‘we do it perfectly’ or ‘we suddenly become experts’ but it says ‘we are willing to learn.’””

- NFN Scout, deputy director of the National LGBT Cancer Network

“We need systems changed to solve this problem; we need all the medical schools to change their curriculum routinely. We need professional societies like ASCO to provide more detailed information to their member doctors on the subject,” he said, adding that organizations should also provide accreditation that includes competency in LGBTQ needs and fund research that helps support prevention campaigns. “There are a lot of different system changes that need to happen in order to fix this.”

Quinn agreed. “We think physicians are a great place to start but we know that in order for patients to get the best possible care that institutions need to be trained — from the nurses to schedulers to the valet — about culturally relevant interactions.”

In the meantime, small changes can make important differences. Scout said providers can make their offices more welcoming to LGBTQ individuals by doing things like making intake forms and health promotion materials more inclusive.

“We have a long history of problems with the medical system, which means we come in wary,” he said. “If you’re trying to be a welcoming provider, it’s really up to you to provide some sign of welcome; and that can be as literal and as small as a rainbow sticker in your waiting room. Those are the types of things that help us relax.”

“If you’re an oncologist and aren’t willing to make even that small of an investment, then, unfortunately, you’re standing on the shoulders of people who have been bigoted and discriminatory in the past,” he added. “A rainbow sticker in your office doesn’t say ‘we do it perfectly’ or ‘we suddenly become experts’ but it says ‘we are willing to learn.’”

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