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

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September 24, 2021

12 min read

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…

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