Recent data found that 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. These findings were presented by the study's lead author, Colin Burnett, MSc, a medical student in the T.H. Chan School of Medicine at UMass Chan Medical School, during the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved (Abstract B112).
"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 Burnett in a statement.
"In general, there's a fundamental paucity of research to understand the experiences of LGBTQI+ people along their cancer care continuum," he noted during the presentation. "And with advances in therapeutics and increasing population sizes for LGBTQI+ cancer survivors, it's more important now than ever for us to learn about how their experiences throughout cancer screening, diagnosis, treatment, and survivorship differ from those of their heterosexual and/or cisgendered counterparts to provide more personalized patient-centered care."
Methodology & Findings
The aim of their study, according to Burnett, was to characterize the experiences of this patient population and contribute to the greater clinical understanding of how LGBTQI+ individuals on a cancer journey experience care.
Burnett and colleagues identified 2,250 LGBTQI+ cancer survivors who completed OUT: The National Cancer Survey, conducted by the National LGBT Cancer Network in 2020-2021. They classified survivors by their self-reported level of satisfaction with their overall cancer care and evaluated survey results to characterize the availability of tailored health care for LGBTQI+ individuals, as well as tailored health education resources and the impact of such materials.
"Our project specifically focuses on their access to health education resources tailored to their unique experiences as members of the LGBTQI+ community in areas of physical activity, mental health, alcohol consumption, and tobacco use and that relation to the self-reported satisfaction with overall cancer care," Burnett explained.
When discussing the results of their study, Burnett noted that "few LGBTQI+ survivors have ever reported having access to health education resources tailored to their LGBTQI+ experiences in areas of physical activity with only 8 percent reporting ever having access; mental health with only 29 percent ever reporting having access; alcohol consumption at 12 percent ever having access; and tobacco use, specifically with cessation, with ever having access at 7 percent. [This is] despite large proportions of survivors reporting a desire or a value to having access to these materials."
Among individuals who ever did have access to tailored resources, there were no substantial differences in satisfaction in overall cancer care, according to Burnett. The data also revealed that survivors who were comfortable sharing their LGBTQI+ identities with health care providers were more likely to be satisfied with overall cancer care when compared with those who reported feeling unsafe sharing their LGBTQI+ identity.
Overall, the study authors found that 92 percent of survey respondents were satisfied with their cancer care. However, Burnett and colleagues reported that those who felt unsafe sharing their gender or sexual identity with their providers had lower levels of satisfaction with their cancer care. Thirty-eight percent of survivors who felt unsafe sharing their identity were "less than satisfied" with their cancer care versus only 3 percent of those who reported feeling safe sharing their identity, according to the researchers.
There are limitations to this research that must be addressed, Burnett noted during his presentation. This includes the self-selecting, internet-connection population of predominately well-educated, non-Hispanic White participants, he explained. The other limitation was the use of a single global satisfaction care item, which limited the researchers' ability to tease apart the components of satisfaction.
"However, we have to acknowledge also that this is one of the largest, most diverse collections of data for LGBTQI+ people with cancer and that's one of the best of which to extrapolate these types of subjective experiences," Burnett said.
Key Takeaways
While many health care teams are working to better care for LGBTQI+ patients, Burnett noted that their research highlights a need for more resources that address cancer risk factors and how they specifically pertain to this patient population. The researchers recommend more widely generating and distributing health education materials tailored to LGBTQI+ experiences on topics of cancer and common health considerations at cancer centers and primary care practices. They also suggest efforts to "increase LGBTQI+ and ally visibility in all cancer care delivery spaces through provider queer-competency training and environmental indicators of support to improve feelings of safety with provider teams."
"We need to increase the availability of health education resources generated specifically to address the individual needs of LGBTQI+ people," Burnett emphasized. "They don't have the access now and they believe there is value to it.
"And then, the second recommendation would be to train our health care teams and staff to ensure the creation of safe spaces so that all patients feel comfortable or safe sharing their LGBTQI+ identity should they choose to do so," he concluded.
Catlin Nalley is a contributing writer.