Cancer survivors who self-identified as being lesbian, gay or bisexual were more than twice as likely as heterosexual cancer survivors to have participated in cancer clinical trials, according to data from a small study presented at the Fifth AACR Conference on The Science of Cancer Health Disparities, held here Oct. 27-30, 2012.
“The data from which our findings were derived were incredibly limited. We have to interpret these data cautiously,” said Jennifer M. Jabson, M.P.H., Ph.D., a postdoctoral research fellow in the department of community health sciences at Boston University School of Public Health.
In 2011, the Institute of Medicine (IOM) issued a report titled “The Health of Lesbian, Gay, Bisexual and Transgender People: Building a Foundation for Better Understanding,” in which it identified this community as medically underserved. Jabson and colleagues studied the representation of the lesbian, gay and bisexual community in cancer clinical trials to add to existing knowledge about their experience with cancer and their participation in the clinical trial system.
The researchers used data from the Behavioral Risk Factor Surveillance System and an optional module that assesses cancer survivor participation in cancer clinical trials. They collected data from five states – Massachusetts, New Mexico, Wisconsin, Alaska and California – that used this module and an item asking self-identified lesbian, gay and bisexual status. The total population was 4,339 people.
“We thought there would be an under-representation of lesbian, gay and bisexual individuals in the data,” Jabson said. “We only found 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.”
However, the results of this study indicated that 12.5 percent of the cancer survivor population that self-identified as being lesbian, gay and bisexual 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 lesbian, gay and bisexual community were more than twice as likely to report participation in a clinical trial.
Jabson said it is difficult to infer an explanation for these findings.
“We need to replicate our findings 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,” she said. “In addition, we agree with the IOM report that sexual orientation should be collected as a demographic variable in population-based health surveillance systems and cancer registries.”
Additional studies are warranted to explain the greater representation of individuals who self-identify as lesbian, gay and bisexual in cancer survivor clinical trials and potentially to identify ways to prevent and treat cancer in this community, according to Jabson.
Lesbian, Gay, and Bisexual Cancer Survivor’s Participation in Cancer Clinical Trials: Findings from a National Health Survey
Introduction: Clinical trials are important tools for advancing cancer treatment, prevention, and control. To identify and describe clinical effects relevant to underserved groups, representation of medically underserved cancer survivors in clinical trials is necessary. Medically underserved groups historically have been defined to include racial/ethnic minorities, under-insured or uninsured groups, those with low levels of education, and those with low socioeconomic status. The recent Institute of Medicine report on the Health of Lesbian, Gay, Bisexual, and Transgender People also describes lesbian, gay, and bisexual (i.e., LGB) people as medically underserved. Medically underserved groups are known to be underrepresented in cancer clinical trials, except in the case of LGB cancer survivors. Currently, no published research has examined LGB cancer survivor’s participation in cancer trials. Given this paucity in the literature, this study aimed to test the hypothesis that prevalence of clinical trial participation would be lower among LGB cancer survivors than heterosexual cancer survivors.
Methods: Data were from the Behavioral Risk Factor Surveillance System (BRFSS), which is a health surveillance program sponsored collaboratively by the Centers for Disease Control and Prevention (CDC) and U.S. states. The BRFSS is administered annually to probability-based samples of non-institutionalized adults over 18 years of age. The Cancer Survivorship module is an optional module that states may elect to use and that assesses cancer survivor participation in cancer clinical trials. Data for this study are from five states’ 2010 BRFSS surveys that included both the Cancer Survivorship module and an item asking self-identified LGB status to either their entire survey population (Massachusetts, New Mexico, Wisconsin, and Alaska) or to one or more probability-based sample splits (California) (n=4,339).
Results: Participation in cancer clinical trials was higher among LGB cancer survivors (12.5%) than among heterosexual cancer survivors (6.0%) (p = .005). In the multivariate model, adjusted by age, sex, education, race/ethnicity, and survey state, LGB cancer survivors were more than twice as likely, as heterosexual cancer survivors, to report participation in a clinical trial (AOR 2.17, 95% CI 1.21-3.90).
Conclusion: LGB cancer survivors had greater likelihood of cancer clinical trial participation than heterosexual cancer survivors, and this association was not explained by education. The finding was not expected given the historic marginalization of this group and previous reports that up to 15% of clinical trials explicitly excluded LGB participants. The finding may be explained by insurance coverage. LGB people are more likely to lack health insurance than heterosexuals. Thus, LGB cancer survivors may be more inclined to seek care through clinical trial participation. Small sample size precluded examining whether denial of insurance coverage was an explanatory factor for trial participation; however this is a logical next step for future research.
Jennifer M. Jabson1, John R. Blosnich2. 1Boston University School of Public Health, Boston, MA, 2University of Rochester Medical Center Department of Psychiatry, Rochester, NY.
American Association for Cancer Research