Source: Schabath MB, et al. J Clin Oncol. 2019;doi:10.1200/JCO.18.00551.
Disclosures: Dizon, Quinn, Schabath and Teplinsky report no relevant financial disclosures.
September 24, 2021
12 min read

‘Knowledge gap’ hinders efforts to improve care of LGBTQ+ patients

Source: Schabath MB, et al. J Clin Oncol. 2019;doi:10.1200/JCO.18.00551.
Disclosures: Dizon, Quinn, Schabath and Teplinsky report no relevant financial disclosures.
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Standard cancer care may fail to adequately address the needs of LGBTQ+ individuals, who face substantial disparities in access to screening, treatment and outcomes.

Although subsets of this population have higher rates of cancer-associated risk factors — such as smoking, alcohol use and obesity — they appear less likely than other groups to undergo timely cancer screening. Studies also have shown LGBTQ+ individuals have lower rates of health insurance coverage, less satisfaction with cancer care and worse survivorship.

Collection of sexual orientation or gender identity data is necessary to answer fundamental questions in oncology, according to Don S. Dizon, MD, FACP, FASCO. If we do not collect the data, there is very little we can do to analyze outcomes, he said.
Collection of sexual orientation or gender identity data is necessary to answer fundamental questions in oncology, according to Don S. Dizon, MD, FACP, FASCO. If we do not collect the data, there is very little we can do to analyze outcomes, he said.
Source: Don S. Dizon, MD, FACP, FASCO.

Assessment of these disparities has been limited by a lack of sexual orientation or gender identity (SOGI) data. Many oncology practices do not collect these data for various reasons, including lack of leadership prioritization and resources, as well as personal attitudes.

“There is a ‘black hole’ in our understanding of health equity in oncology as it relates to sexual- and gender-minorities — if we do not collect the data, there is very little we can do to analyze outcomes,” Don S. Dizon, MD, FACP, FASCO, professor of medicine at Brown University, told HemOnc Today.

“We are seeing people who identify as gay or lesbian avail themselves of screening services less than those who are heterosexual.” Dizon added. “It is also believed that patients who identify as sexual- or gender-minority experience hostile encounters within the health care system, and this extends into the cancer care space. However, we do not know for certain if this is true because most cancer centers are not routinely collecting SOGI data.”

Oncologists appear to recognize the need for these data.

In a survey of 257 ASCO members, results of which were presented at this year’s virtual ASCO Annual Meeting, 79% of respondents indicated it is important to have both sexual orientation and gender identity data to provide quality cancer care; 14% indicated neither was important. However, only 42% reported that their institutions collect sexual orientation data, and 48% reported they collect gender identity data.

“It is vital that the oncology community understand the collection of SOGI data is essential — even ASCO members believe it is an important quality measure,” Dizon said. “However, it should be noted that the 54-item ASCO online survey was answered by fewer than 300 individuals, and that perhaps only the most enlightened oncologists took part in the survey.”

HemOnc Today spoke with oncologists and other experts about risk factors for cancer and barriers to care among the LGBTQ+ population, efforts to improve collection of SOGI data, and actions clinicians can take to better meet the needs of sexual- and gender-minority patients.

Risk factors, barriers to care

Risk factors for certain cancers are more common among LGBTQ+ individuals.

In a study of more than 17 million cancer survivors published in Cancer, Li and colleagues found bisexuals had significantly higher rates of current smoking (32.2% vs. 13.6%; P < .0001) and binge drinking (17.1% vs. 9.1%; P = .029) than heterosexual individuals.

“LGBTQ+ individuals have higher rates of cancer-associated risk factors — including alcohol abuse, poor diet and higher BMI — and are more likely to smoke tobacco and engage in sun-seeking behaviors,” Matthew B. Schabath, PhD, associate member in the departments of cancer epidemiology and thoracic oncology at Moffitt Cancer Center, told HemOnc Today. “What is important, even outside of oncology, is that the LGBTQ+ population experiences poorer overall quality of life in the health care setting, greater distress, greater relationship difficulties and is more likely to engage in illicit substance abuse.”

Gwendolyn P. Quinn, PhD
Gwendolyn P. Quinn

The stigma and discrimination these individuals experience in daily life, as well as in the health care setting, may make them more likely to engage in behaviors that contribute to cancer risk, according to Gwendolyn P. Quinn, PhD, professor in the department of obstetrics and gynecology and the department of public health at NYU Langone Health.

“These individuals may be alienated by their family of origin or discriminated against in the workplace, further leading to lower-paying jobs, and they are more likely to be under- or noninsured,” Quinn told HemOnc Today. “Daily aggressions and microaggressions may cause one to turn to substance abuse. There also may be challenges in finding a clinician or health care setting that is accessible and welcoming.”

Results of OUT: The National Cancer Survey, which included 2,728 LGBTQI+ cancer survivors (mean age, 59 years; 85% white; 63% assigned male sex at birth) who underwent regular cancer screenings before and after diagnosis, showed 10% of respondents reported having received their cancer diagnosis in a disrespectful manner.

“These individuals have to prepare to experience hostility repeatedly, which is not the experience of most heterosexual individuals,” Dizon said.

In addition, many oncologists lack awareness of cancer care disparities among the LGBTQ+ population.

In a national survey that included responses from 149 oncologists across NCI-designated cancer centers, Schabath, Quinn and colleagues found 65.8% of participants agreed it is important to know the gender identity of patients, but only 39.6% agreed it is important to know patients’ sexual orientation. Results of the survey, published in Journal of Clinical Oncology, also showed the majority of respondents (70.4%) reported having high interest in receiving education on the unique health needs of LGBTQ+ patients.

After completion of the survey, researchers observed significant decreases in the proportion of respondents who expressed confidence in their knowledge of the unique health care needs of lesbian, gay and bisexual patients (53.1% to 38.9%) and transgender patients (36.9% to 19.5%). Results of stratified analyses showed having LGBTQ+ friends or family members, political affiliation, oncology specialty, years since graduation and region of residence had a limited influence on oncologists’ attitudes and knowledge about LGBTQ+ health and institutional practices.

More education and training on the psychosocial needs of the LGBTQ+ population is needed, according to Quinn.

“Except in the case of transgender people with cancer — among whom treatment may differ based on hormone use and prior surgeries — the cancer treatment provided to lesbian, gay or bisexual individuals may not differ from a cisgender person, but the values, goals and shared decision-making may,” Quinn said. “We lack evidence of best practices in this area. It is also important to acknowledge that each subgroup within the LGBTQ+ community has unique characteristics — lesbian, gay and bisexual are sexual orientations, and transgender/non-binary refers to gender identity.”

Drivers of disparities

Several factors may be responsible for the cancer disparities experienced by the LGBTQ+ population, Eleonora Teplinsky, MD, oncologist at The Valley Hospital in New Jersey, told HemOnc Today.

Eleonora Teplinsky, MD
Eleonora Teplinsky

“Providers may not know or feel comfortable discussing issues of the LGBTQ+ community and patients may not feel comfortable disclosing their SOGI to health care providers. This, of course, can result in barriers to care because patients who do not disclose their identity may not receive the recommended education and cancer screenings,” Teplinsky said.

Quinn agreed.

“There are also myths that lesbian women do not need PAP testing and pelvic exams or the HPV vaccine because they are not having sex with people with a penis. Transgender people may not identify with those parts of their body that are typically screened for cancer — a transwoman may not undergo prostate exams as that could cause dysphoria,” Quinn said.

Others may not be made aware of the importance of screening.

Results of a cross-sectional survey, published in British Journal of General Practice, showed that among 64 transgender men and nonbinary people assigned female at birth who were eligible for cervical cancer screening, 37 underwent screening and only 34 reported having sufficient information about cervical cancer screening.

Lack of screening, fear of discrimination in the health care setting and poor health insurance coverage all have contributed to higher rates of late-stage disease at presentation among LGBTQ+ individuals compared with their cisgender heterosexual counterparts, Quinn said.

Matthew B. Schabath, PhD
Matthew B. Schabath

LGBTQ+ individuals also have reported lower satisfaction with cancer treatment and higher rates of psychological stress during survivorship, Schabath said.

“This points to the fact there is, indeed, a health disparity among the LGBTQ+ population, but it also shows the unique health care, cancer care and psychosocial care needs of this population,” he said. “Providers need to understand and acknowledge this to provide personalized health care.”

This includes understanding the goals and values of LGBTQ+ patients in terms of end-of-life care, which survivorship care plans typically tailored to white, cisgender individuals may not take into account, Quinn added.

“LGBTQ+ people may need to know what legal rights a partner has, how to ensure partners can have custody of minor children, and how to ensure their support persons — who may not include their biological family — can direct their final wishes, burial plans and wills,” she said.

Other challenges may continue for years after diagnosis and treatment.

In the Cancer study, Li and colleagues found that — compared with heterosexual individuals — bisexual men were 5.14 (95% CI, 5.05-5.23) times more likely and bisexual women were 3.23 times (95% CI, 3.18-3.28) more likely to be told they had depressive disorders. In addition, all lesbian, gay and bisexual groups reported significantly higher prevalence of inadequate sleep than their heterosexual peers, particularly lesbians (OR = 2.14; 95% CI, 2.1-2.18).

“These results ... can provide rationales for future studies and guide interventions to relocate resources to better promote equality,” the researchers wrote.

SOGI data collection

Most cancer centers do not routinely collect SOGI data; thus, LGBTQ+ patients may not receive cancer care tailored to their gender identity.

“Quality care and relevant shared decision-making occur when a physician knows the whole person — not just the parameters of their disease, but also what they value, their support people and their goals for care,” Quinn said. “Improvements are needed in the collection of SOGI data to provide tailored care and to assure patients that they can provide this information in a safe and welcoming health care environment. Although nondiscrimination policies and rainbow flags are helpful to show some level of awareness, there must be trained staff behind this signage. We also need a better understanding from the LGBTQ+ community about how to improve their care, how to provide education in ways that are culturally relevant, and to know what makes a positive and a negative health encounter experience for them.”

As a follow-up to their 2019 study, Quinn, Schabath and colleagues conducted a study within the ECOG-ACRIN group, which includes oncologists and other health care providers. They administered a web-based survey that assessed the attitudes and knowledge of LGBTQ+ health and institutional practices of 490 health care providers (mean age, 46 years; 77% white; 81% heterosexual).

Results showed 77% of respondents reported high interest in receiving education on the unique health care needs of LGBTQ+ patients.

“It is clear that providers realize the collection of SOGI data is important,” Schabath said. “However, without institutional support and resources, it will never happen. We can break down barriers with the hope and aim to have widespread SOGI collection. We can create resources and educate our leaders and people on the importance of collecting this information.”

In 2017, Moffitt Cancer Center began collecting SOGI data with other demographic information.

“When patients are asked about their race, ethnicity and age, they are also asked about their sexual orientation and gender identity,” Schabath said. “Every patient is asked to complete standard-of-care collection of information, and our completion rates are greater than 90%. This shows that if we put this forth as a standard of care, patients will provide us the information.”

Identifying populations at risk for health care disparities is key to closing gaps in care, Schabath added.

“If we never collected race and ethnicity data, we never would have been able to identify racial and ethnic disparities in cancer,” Schabath said. “We need to be able to identify the barriers that exist within the LGBTQ+ community so that we can move the research and close the disparities gap. We will never be able to close the gap or fully quantify the degree of the disparity until we have widespread collection of SOGI data.”

Quinn said oncologists should encourage disclosure of SOGI status from their patients, explain to them why it is important and apply the information once received.

“Clinicians are unaware of the importance of knowing the sexual orientation or gender identity of their patients, and patients may be equally unaware of why this information is being collected and is necessary,” Quinn said. “Race and ethnicity are routinely collected, and these data have helped us to provide the public with important statistics, but they rarely impact the care provided to an individual patient. The collection of SOGI data can improve the quality of cancer care, as well as provide meaningful data on cancer rates.”

Dizon agreed that analysis of SOGI data could have implications for all LGBTQ+ patients with cancer, particularly transgender individuals.

“Collection of SOGI data is especially important for individuals with a sex assigned at birth as female but who are currently male and taking gender-affirming hormone therapy,” Dizon said. “When it comes to calculating their kidney function and creatinine clearance and their body surface area — which gender do we assign to them? When we look at an EKG and interpret results, which lens are we looking at — the gender that they are or the gender they were born to? These are fundamental questions in oncology that we need to answer, but we will not be able to do so unless we have proactive collection of SOGI data.”

Looking ahead

Experts with whom HemOnc Today spoke agreed that more data are needed to reduce disparities in cancer care for LGBTQ+ patients.

“The NIH is convening on the collection of SOGI data and is expected to set the standard for SOGI data collection at the federal level,” Dizon said. “This would mean SEER data would require cancer registries to ensure SOGI data are collected. Beyond that, there must be a trilevel educational campaign to include national/international leadership, community education and institutional buy-in. We must also recognize the sensitivity of all of this, educate others on why this is so important, and ensure that patient privacy is maintained throughout the entire process. This goes beyond ‘becoming a more welcoming specialty’ and ‘being pillars of our community.’ It is more than just pronouns.”

Oncologists are recognizing the need for change, according to Schabath.

“Eight or 9 years ago, data indicated providers’ attitudes toward and knowledge of the LGBTQ+ population were low,” Schabath said. “There is still a knowledge gap in the unique health care needs of this population, but it is improving. This population has been extremely marginalized and stigmatized and those things have not gone away, but there is finally greater acceptance and realization of the importance of this disparity in this population. We are starting to see a groundswell of oncology care providers focused on wanting to know how to better treat this patient population.”

Many institutions have taken steps to promote equitable and inclusive care for LGBTQ+ patients and their loved ones.

A new initiative at NYU Langone Health’s Perlmutter Cancer Center aims to create a more inclusive environment for LGBTQ+ individuals by increasing awareness among health care providers and staff. The initiative was inspired in part by the research of Quinn and colleagues.

“We must consider that among some individuals, sexual orientation and gender identity are fluid. People change and their sexual orientations and gender identities may also change, but we must understand that this is not a sign of mental illness,” Quinn said. “Further, not everyone identifies with the terms LGBTQ+ — some men who have sex with men do not identity as gay and may be in committed heterosexual relationships. Our reason to know a patient’s sexual orientation should be to assess cancer risk, as well as provide tailored cancer care.”

Oncologists should be mindful of the way they ask questions so as not to appear judgmental, Quinn said.

“For example, in the case of transgender people, it may be important to ask the nomenclature they use to describe their body parts and to tailor your questions based upon that,” she said. “If you make a mistake, apologize and then move on. Ask your patients if something you have said or done makes them feel uncomfortable. Importantly, encourage disclosure of SOGI status from patients and apply that information when you receive it.”

Teplinsky said that health care providers should have at least some understanding of the unique challenges faced by LGBTQ+ patients.

“This impacts the counseling that we provide our patients, which can ultimately provide them better care,” Teplinsky said. “These are year-round issues that need to be brought to the forefront when we are considering health care disparities in oncology.”

“When LGBTQ+ patients enter a cancer clinical practice, it would be great for all clinicians to understand that we are treating the cancer of every person regardless of their gender, race and socioeconomic status,” Dizon said. “It is the role of those of us who are committed to equity in health care to be on the front lines of ensuring these issues are understood, and also that we can go beyond that and lead in the areas of communication and understanding.”

Click here to read the Point/Counter to this Cover Story.