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LGB Cancer Survivors Make Good Use of Clinical Trials

SPH study seems to disprove commonly held opinions

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LGB lesbian, gay, and bisexual cancer survivors in cancer clinical trials, Jennifer Jabson, Boston University BU School of Public Health SPH researcher

The study by Jennifer Jabson raises questions about whether the LGB community may have different experiences with cancer than heterosexual people. Photo courtesy of Jabson

When School of Public Health researcher Jennifer Jabson and a colleague began looking at the representation of lesbian, gay, and bisexual cancer survivors in cancer clinical trials, they expected to see lower participation rates than among heterosexual survivors. That was because in general, medically underserved populations, as the LGBT community has been identified, have been underrepresented in cancer prevention and treatment trials.

“We expected there would be an underrepresentation of lesbian, gay, and bisexual individuals in the data,” says Jabson, a postdoctoral fellow in the department of community health sciences. “We found only one prior paper that had been published in the last 10 years on the topic, and it found that individuals in this community were more often excluded in all clinical trials, not just those specific to cancer.”

So much for expectations.

What Jabson and John Blosnich of the University of Rochester Medical Center found was that cancer survivors who self-identified as lesbian, gay, or bisexual were more than twice as likely as heterosexual cancer survivors to report participation in cancer clinical trials.

Their study—although done with a small sample—raises questions about whether the LGB community may have different experiences with cancer than heterosexual people, while also underscoring a need for sexual orientation to be considered as a demographic variable in health and cancer surveillance systems.

“Therapeutic trial databases and other health-outcomes data don’t record information about sexual orientation,” says Jabson, whose fellowship is funded by the American Cancer Society. “We agree with the Institute of Medicine report “The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding” that sexual orientation should be collected as a demographic variable in population-based health surveillance systems and cancer registries.” The IOM report identified the LGBT community as medically underserved.

While Jabson cautions that the study sample was too small to draw any conclusions, she says the findings—published in the Annals of Epidemiology and presented in October at an American Association for Cancer Research conference on health disparities—are a step toward understanding the LGB community’s experiences with cancer and participation in the clinical trial system.

She and Blosnich used data from the Centers for Disease Control and Prevention Behavioral Risk Factor Surveillance System, the world’s largest ongoing telephone health survey system, including a module that assesses cancer survivor participation in clinical trials. They collected data from five states—Massachusetts, New Mexico, Wisconsin, Alaska, and California—that included self-identified lesbian, gay, and bisexual status. The total population was 4,339 people.

The results of the study indicate that 12.5 percent of the LGB cancer survivor population participated in clinical trials, compared with 6 percent of the heterosexual cancer survivor population. When adjusting the data to account for participants’ age, sex, education, race/ethnicity, and survey location, cancer survivors from the LGB community still were more than twice as likely to report participation in a clinical trial.

Jabson says it is difficult to infer an explanation for the findings. Literature pertaining to clinical trial participation indicates that typically, people who are sicker and resistant to treatment are more likely to enroll in clinical trials.

“Some medical experts have suggested that cancer patients may become motivated to participate in clinical trials when other cancer treatment options are limited because of aggressive, rare, or late-stage diagnosed cancers,” she says. “If LGB people are more likely to experience those forms of cancer or are diagnosed at later stages, they may be more inclined to participate in trials.”

She says the data needed to test those hypotheses are not available in the Risk Factor Surveillance System, “but this is a logical step for future research.” One study, published earlier this year, found that breast cancer survivors who were partnered with women were more likely to die of their breast cancer than heterosexual women.

Alternative hypotheses include the possibility that LGB cancer survivors may be more aware of clinical trials because they could be more likely to receive care at facilities such as academic cancer centers that offer clinical trials.

Jabson is hopeful that the findings could be replicated in a larger and more comprehensive sample “to explore some of the causal or explanatory variables and to make sure that the result was not an artifact of the sample.” If the findings hold up, they could be useful in identifying ways to prevent and treat cancer in the LGB community, she says.

There has been limited research on cancer rates in the LGB community, most of it conducted in the last decade. A 2004 study found that lesbians were less likely to report having annual or routine screenings for cervical cancer.

Last year, a study led by Ulrike Boehmer, an SPH associate professor of community health sciences, found that gay men had a higher prevalence of cancer compared with heterosexual men, and that lesbian and bisexual female cancer survivors reported poorer health than heterosexual female cancer survivors. In that study, published online in Cancer, gay men were 1.9 times as likely to report a cancer diagnosis as heterosexual men, while lesbian and bisexual female cancer survivors were 2 and 2.3 times more likely to report “fair” or “poor” health, compared to heterosexual female cancer survivors.

Jabson says much of the recent research supports the need to further explore differences in the prevalence of cancer by sexual orientation. The IOM recommends several strategies, including the prioritizing of LGBT health research at the federal level; collection of sexual orientation information on national health and other relevant surveys and in electronic health records; and encouragement by funding agencies of individual researchers to explicitly address the inclusion and exclusion of sexual and gender minorities.

“We have only begun to accumulate the necessary evidence to understand the health disparities experienced by LGBT populations,” Jabson says. “Much more research is needed. It’s an endeavor that will require coordinated efforts at multiple levels.”

Lisa Chedekel can be reached at chedekel@bu.edu.

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