LGBTQ+ patients have long experienced inequities in health, and research shows they are more likely to experience substance use, sexually transmitted diseases, cancers, cardiovascular diseases, obesity, bullying, isolation, rejection, anxiety, depression, and suicide.
A new study from the Dana-Farber Cancer Institute in Boston found that LGBTQ+ patients are still experiencing disparities in cancer care.
The study, which surveyed 817 LGBTQ+ cancer patients and 115 oncology professionals around the US, found that only 24% of LGBTQ+ cancer patients feel comfortable sharing their gender identity with their provider. Only 4% of patients feel like their care team treated their partner with respect, and only 34% of their partners/caregivers felt welcome at appointments.
About 7% of people in the US identify as lesbian, gay, or bisexual, and 1.6% of adults are transgender or nonbinary, and according to Dana-Farber, LGBTQ+ patients have a higher risk of developing certain cancers, including Kaposi sarcoma, cervical, non-Hodgkin lymphoma, Hodgkin lymphoma, lung, liver, and anal. The institute’s new research suggests that there’s still a way to go to address health disparities affecting LGBTQ+ patients.
“When you want to take quality care of somebody, you have to know who they are,” Shail Maingi, the lead author of the study, told Healthcare Brew.
Maingi is a member of Dana-Farber’s Cancer Care Equity Program and a doctor at the Dana-Farber Brigham Cancer Center at South Shore Health.
“A cancer diagnosis is one of the most devastating things that can happen to somebody,” she said. “If you don’t acknowledge someone’s sexual orientation, for example, what can happen is your first time meeting that patient, you don’t acknowledge their spouse of 20 years, you don’t acknowledge the person who’s going to be there when they’re nauseous, who;s going to be there when there’s end-of-life decisions to be made.”
While 84% of doctors reported feeling comfortable treating LGBTQ+ cancer patients, according to the study, 30% of doctors reported feeling unsure about how being LGBTQ+ affects treatment decisions, and said they were not sure how to discuss gender and sexuality with their patients.
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When doctors do not receive proper training, patients miss out on screenings and key information, the study found.
About 80% of LGBTQ+ cancer patients reported not receiving appropriate preventive cancer screening—40% of respondents said their provider did not mention tests—and 28% did not have a healthcare provider.
Less than half of patients learned from healthcare providers how cancer treatment affects fertility. About 23% of patients received counseling, support groups, and quality-of-life care, like sexual function counseling, and 19% reported receiving LGBTQ-specific resources and education.
“These people are not being properly told the side effects of their potential treatments,” Maingi said. “When there is data in this area—which there is—physicians don’t know. It’s not part of the curriculum. It’s not something that’s talked about frequently in professional society.”
Patients felt more comfortable, according to the survey, if their care teams used their preferred pronouns, made public statements of support, or wore terms that showed acceptance (like displaying pronouns on their badge). Still, just 50% of gender-expansive patients—people whose gender identity is beyond the traditional binary—said they were consistently referred to with the correct pronouns, according to the survey.
With the results of the study, the research team created a toolkit for healthcare providers to help improve LGBTQ+ cancer patient experiences. The team consulted with providers at clinical sites around the country to compile the toolkit, Maingi said. Some of the suggested changes included hiring more LGBTQ+ staff, collecting better data, and engaging in local Pride events.
“The survey’s purpose was to really hear the patients’ voices so that we can use that as a tool to motivate change,” Maingi said.
The research was led by Maingi alongside the H. Lee Moffitt Cancer Center and Research Institute. Continuing medical education company Prime Education also collaborated on the project.