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Sex & Gender Minority Patients
There’s a reasonable amount of qualitative evidence showing that LGBTQ patients experience discrimination—in either subtle or overt ways. But there’s much less evidence quantifying whether this leads to disparities in patient outcomes for people who are LGBTQ.
That’s according to Erik Eckhert, MD, a hematology and medical oncology fellow at Stanford Medicine, who is the lead author of a study that investigated disparities in breast cancer treatment and outcomes of patients from sex and gender minority (SGM) groups compared with cisgender heterosexual patients (JAMA Oncol 2023; doi:10.1001/jamaoncol.2022.7146). The recent data, which comes from patients treated at a single institution, showed that indeed there are several potential health care disparities among patients from sex and gender minority groups with breast cancer.
“Our team found that, compared to cisgender heterosexual patients, patients from sex and gender minority groups experienced about a twofold longer time from symptom onset to cancer diagnosis, were more likely to decline an oncologist-recommended treatment and had an approximately threefold higher rate of breast cancer recurrence,” Eckhert told Oncology Times. It’s striking that such significant disparities can be seen in breast cancer care, he said, “but less so with respect to the larger literature of LGBT health and cancer outcomes for minoritized populations.”
There is plenty of other evidence that individuals from historically stigmatized groups or disadvantaged groups (such as those from communities of color, those with worse housing or insurance status, those whose primary language is not English, or sex and gender minority groups) tend to experience more discrimination in health care, more barriers to getting high-quality care, and worse health outcomes.
Eckhert has been part of other research on the topic of LGBTQ health disparities. And he worked on the Stanford Internal Medicine LGBTQ health curriculum for resident physicians—both developing it and teaching it.
“From these experiences, I came to understand that our health care apparatus is primarily designed by and for cisgender heterosexual people. And as a corollary, LGBTQ people are often discriminated against in health care settings or have difficulty finding a provider who is actually knowledgeable about caring for sex and gender minority populations,” he said.
Scout, PhD, Executive Director of the National LGBT Cancer Network, agreed that this data helps elucidate sex and gender minority disparities in cancer care.
“This study put a fine point on many of the exact issues we know the SGM communities have experienced for years,” he noted. “Research has long shown we avoid care, often due to a history of poor treatment. Lack of respect by clinicians towards us also hinders our treatment willingness and outcomes. We are also more likely to report low satisfaction with treatment. This study brought all three of those known phenomena into high relief then tied it to tangible evidence of worse outcomes.”
Study Details
The recent study was an exposure-matched retrospective case-control study of 92 patients from sex and gender minority groups treated at Stanford between the first day of 2008 and the first day of 2022, matched to cisgender heterosexual patients with breast cancer by year of diagnosis, age, tumor stage, estrogen-receptor status, and ERBB2 (HER2) status.
Outcomes measured included the following:
- patient demographic and clinical characteristics, as well as treatment quality, as measured by missed guideline-based breast cancer screening;
- appropriate referral for genetic counseling and testing;
- patient refusal of an oncologist-recommended treatment;
- time from symptom onset to tissue diagnosis;
- time from diagnosis to first treatment; and
- time from breast cancer diagnosis to first recurrence.
In addition, researchers evaluated other treatment decisions and outcomes. These included mastectomy versus lumpectomy, chest reconstruction, adjuvant radiation therapy after lumpectomy, neoadjuvant chemotherapy for Stage III disease, antiestrogen therapy for at least 5 years for estrogen receptor-positive disease, and ERBB2-directed therapy for ERBB2-positive disease. No difference was found in socioeconomic status or insurance status in the two cohorts. Some differences were shown in race/ethnicity, but they didn’t affect findings in multivariate analysis. The median age at diagnosis for all patients was 49 years; 74 were lesbian (80%), 12 were bisexual (13%), and six were transgender (6%).
In comparison to cisgender heterosexual patients, individuals from sex and gender minority groups experienced a delay in time from symptom onset to diagnosis (median time: 34 days vs. 64 days), more likely to decline an oncologist-recommended treatment modality (35 [38%] vs. 18 [20%]); and they were more than 3 times more likely to experience a breast cancer recurrence.
“This was a study of patients treated at Stanford University, which serves a high percentage of patients in the top socioeconomic brackets and is located in the San Francisco Bay Area, which tends to be more accepting of people from sex and gender minority groups,” Eckhert noted. “Although these factors hamper generalizability to all patients from sex and gender minority groups with breast cancer, the health care disparities identified here are all the more notable because they persisted despite a more favorable set of social conditions for this population in our hospital’s catchment area.”
Gwendolyn Quinn, the Livia S. Wan, MD, Professor of Obstetrics and Gynecology and Professor in the Department of Population Health at NYU Langone Health, told Oncology Times that one limitation is the small sample size of the study, but that it is otherwise well done. “The findings did not surprise me, for a variety of reasons,” she said.
Quinn, who has been involved in research on LGBTQ cultural competency training in oncology, went on to note that there are known cancer health disparities among the LGBTQ population, including significant medical mistrust among the LGBTQ population. Also, when sexual orientation and gender identity information that is not cisgender/straight is disclosed in medical settings, this information is often not incorporated into that patient’s care. Also, there are misperceptions among the LGBTQ+ community about cancer screening and who should get it, and previous experiences of stigma and discrimination in health care settings for members of the LGBTQ+ community can create barriers to care.
More High-Quality Data
Eckhert and his colleagues conclude in the paper that the results suggest disparities in the care of patients from sex and gender minority groups and warrant further study to inform interventions. He pointed to two previous papers that have investigated disparities in cancer care and screening.
One found that, independent of insurance status, transgender patients are more likely to be diagnosed with more advanced-stage kidney and pancreas cancer than cisgender patients and to have worse survival outcomes for non-Hodgkin lymphoma, prostate cancer, and bladder cancer (J Natl Cancer Inst 2021; doi: 10.1093/jnci/djab028). Another found that, independent of insurance status, sexual minority women engaged less often with preventative health care, including being less likely to report having had a screening mammogram (LGBT Health 2020; doi: 10.1089/lgbt.2019.0274).
But more of this type of high-quality data that focuses not only on the experiences of discrimination for these patients, but also the effect on cancer care outcomes, is needed to move ahead in terms of addressing these disparities, Eckhert noted. A big part of the problem, as the researchers noted in the recent paper, is that sexual orientation and gender identity data are not necessarily currently being collected at most hospitals and cancer registries. Collecting and quantifying the numbers is an important next step.
Eckhert pointed to a 2022 survey of American Society of Clinical Oncology members found that, although more than 75 percent of respondents agreed that knowing sexual orientation and gender identity data is important to providing high-quality care, less than half of them reported collection of this data at their institution (J Oncol Pract 2022; doi: 10.1200/OP.22.00084).
“The bottom line is that oncologists should start asking their patients about their gender and sexual orientation as part of the standard social history intake that also includes assessing housing status, level of education, social or family support, spoken language, and other factors,” he said.
Cancer registries need to start collecting this data. “Once a patient from a sex and gender minority group is identified, providers should work to gain and maintain patient trust in their cancer treatment team by providing compassionate, patient-centered, evidence-based care,” Eckhert said.
And that means, concurrently, there needs to be better provider training in LGBTQ health so that providers are more knowledgeable about how to approach and care for sex and gender minority populations.
“Providers really need to check how welcoming their practice is to sex and gender minority people,” Scout told Oncology Times. “That will go so far in countering the disparities we see in this study. If we can’t find evidence that you’re welcoming on the web, when we walk in, and when we interact with your staff then—to be honest—you’re contributing to perpetuating these health disparities.”
The main message in response to this new data: “We are not doing well enough to improve access to cancer care (across the continuum) for the LGBTQ+ community,” Quinn said. “We need to train clinicians and staff, create welcoming environments (not just rainbow pins), and tailor care and shared decision-making to sexual orientation and gender identity status.”
Sarah DiGiulio is a contributing writer.
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