Most LGBTQI+ Cancer Patients Lack Resources Tailored to Gender/Sexual Identity

PHILADELPHIA – Most LGBTQI+ patients with cancer report that they did not have access to health education materials tailored to their gender and/or sexual identity regardless of their satisfaction with their overall cancer care, according to results presented at the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, held September 16-19, 2022.

“LGBTQI+ persons comprise a significant portion of our U.S. general population, but there remain stark barriers to providing them with proper medical care equitable to that of their heterosexual and/or cisgendered counterparts,” said the study’s lead author, Colin Burnett, MSc, a medical student in the T.H. Chan School of Medicine at UMass Chan Medical School.  

Previous research has shown that while some cancer risk factors, such as alcohol use and smoking, are well studied, members of the LGBTQI+ community may experience these risk factors differently, and they may experience more systemic barriers as they seek medical treatment, Burnett explained. Therefore, information and resources catered to LGBTQI+ identities may address these disparities and help LGBTQI+ people better navigate their cancer care.

In order to assess the availability and impact of such resources, Burnett and colleagues identified 2,250 LGBTQI+ cancer survivors who completed the OUT: National Cancer Survey, conducted by the National LGBT Cancer Network in 2020-2021, and classified survivors by their self-reported level of satisfaction with their overall cancer care. They evaluated survey results to characterize the availability of LGBTQI+-tailored health education resources and the impact of such materials.

Some key findings:

• Seventy percent of the respondents said they lacked access to any mental health resource specific to their LGBTQI+ identities during their cancer care.
• Fifty-six percent indicated a desire for information specific to LGBTQI+ individuals in their post-treatment care plans.
• Survivors who were comfortable sharing their LGBTQI+ identities with health care providers were more likely to be satisfied with overall cancer care compared with those who reported feeling unsafe sharing their LGBTQI+ identity. Overall, 92 percent of survey respondents reported being satisfied with their cancer care. However, those who felt unsafe sharing their gender or sexual identity with their providers (3 percent of the respondents) had lower levels of satisfaction with their cancer care. The study showed that 38 percent of those who felt unsafe sharing their identity were “less than satisfied” with their cancer care, compared with only 3 percent of those who reported feeling safe sharing their identity.

Burnett said that while many health care teams are working to make practices more LGBTQI+-competent, the study indicates that there is a need for more resources that address cancer risk factors and how they specifically pertain to LGBTQI+ patients. In the meantime, he said, “I would encourage LGBTQI+ patients to feel empowered to self-advocate for their own LGBTQI+ needs during the times of cancer screening, diagnosis, treatment, and/or survivorship.”

Burnett suggested that health care institutions could improve the cancer care experience for the LGBTQI+ population by focusing on how to make it safer for patients to share their LGBTQI+ identities with their care team; some strategies include creating LGBTQI+-specific survivor support groups; displaying personal pronouns on provider name badges; and developing clearer ways to note distinctions between gender identity and sex assigned at birth on medical documentation.

Furthermore, all health care providers should be encouraged to respect and acknowledge differences in gender identity and sex assigned at birth, he said.

“I encourage providers to regularly ask their patients about their gender identities and sexual orientations and characterize care delivery with the unique needs and considerations of those identities in the context of their cancer. Many patients will appreciate providers first demonstrating openness and inclusivity to caring for patients in their community,” Burnett concluded. 

Burnett noted that as a cross-sectional study, this research may not capture the full experience of LGBTQI+ patients with cancer. It also does not include the experiences of patients who may have succumbed to their cancer or other medical conditions.

This study received funding support by a Massachusetts Medical Society LGBTQ Health Disparities Grant. Burnett declares no conflicts of interest.

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