Establishing a Patient and Family Advisory Council for Quality (PFACQ) is one of the most direct routes to true patient-centered care, according to Kate Niehaus, MBA, Chair of the PFACQ [ Read More ]
July 2017 VOL 8, NO 7
Are We Listening to the Voices of LGBTQ Patients with Cancer?
The lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community has recently been recognized by the National Institutes of Health and the Centers for Disease Control and Prevention (CDC) as suffering disproportionately from both economic and health disparities, particularly in the realm of cancer, according to Gwendolyn Quinn, PhD, Senior Member in the Health Outcomes and Behavior Program and Director of the Moffitt Survey Methods Core at Moffitt Cancer Center in Tampa, FL.
A goal of the CDC’s Healthy People 2020 initiative was to increase the number of population-based databases, including sexual orientation and gender identity (SOGI) data, to achieve a better understanding of the health risks and needs of the population. “But what we’re struggling with is institutions and providers not knowing why they should be collecting these data, and patients identifying as LGBTQ wondering why you would need to know,” said Dr Quinn.
She and her colleagues at Moffitt Cancer Center conducted a series of research projects in the LGBTQ community to assess these disparities at the patient, institutional, and provider levels and presented their results at the 2017 American Society of Clinical Oncology Quality Care Symposium.
What Do We Know?
Sexual orientation and gender identity are not similar concepts. Sexual orientation refers to attraction or arousal, but gender can refer to biology (sex assigned at birth), identity (the gender persons feel they are, which is not always a binary choice of male or female), or expression (the gender a person displays to the world).
Each of the categories of LGBTQ is distinct. For example, a bisexual man has different health and psychosocial needs than a transgender man. Members of the LGBTQ community are more likely to have no insurance or to be underinsured, to avoid seeking healthcare, and to describe being unable to find a knowledgeable provider.
But according to Dr Quinn, much is still unknown, including the actual incidence and prevalence of cancer and other diseases in this population, what risk factors are modifiable, and how and if institutions collect sexual orientation and gender identity data. “The reason we don’t know a lot about this community is because most institutions and practices don’t collect it,” she said.
The Patient Level
The researchers conducted a systematic review and meta-analysis of cancer in the LGBTQ community and identified 7 types of cancer more prominent in this group: anal, breast, cervical, colon/rectal, endometrial, lung, and prostate. From these SOGI cancer data, they conducted a series of studies in Florida attempting to characterize the healthcare experiences of the community.
A survey of 660 members of an advocacy group called Equality Florida revealed that 65% of respondents over the age of 61 years had ever had a negative experience with a healthcare provider and had felt discriminated against due to their LGBTQ status, whereas the younger generation was more likely to have had a positive experience with a provider. All age-groups said they look for signs and symbols when choosing a provider, such as the Human Rights Campaign symbol or a rainbow flag, to help them identify an LGBTQ-friendly provider.
Surveys of attendees at 2 Pride events in Florida revealed results from a younger population. The surveys focused more on communication needs, asking respondents how often they are asked by a healthcare provider about their sexual orientation or gender identity. Two-thirds of respondents said they are never asked, although the majority feel it is important for their provider to inquire about SOGI status, and 45% still fear a negative reaction if they disclose their SOGI status to a provider. Responses varied when patients described how they prefer to be asked about this information: 32% want their physician to ask them in person, 17% want a nurse to ask them in person, 34% would like to record it on a paper or electronic record, and 17% don’t want to be asked at all.
The Institutional Level
To identify the policies and guidelines for provision of care to LGBTQ patients, the investigators utilized interviews with National Comprehensive Cancer Network (NCCN) panel chairs. They received a response from 39 of the 50 NCCN panel chairs, and only 5 reported having guidelines that address the LGBTQ community. “However, upon review and policy analysis of each of those guidelines, only 1 actually did, and that was the adolescent and young adult oncology panel,” she reported. And of those who reported having no guidelines to address the community, closer inspection revealed that 3 actually did: the anal cancer, distress management, and survivorship panels.
Next, they interviewed diversity representatives from 45 National Cancer Institute (NCI)-designated cancer centers. Of 29 respondents, only 4 reported asking about current gender identity and having a place to chart it in patients’ medical records, 3 collect sexual orientation in patient intake forms, and all institutions collect gender identity data in the binary form of male and female. One-third of interviewees indicated that they do nothing specific for the LGBTQ community, but that they treat every patient equally.
The Provider Level
To characterize oncologists’ knowledge, attitudes, and training needs, the researchers conducted a national survey that was distributed to a random sample of 500 physicians practicing at NCI-designated cancer centers. The majority (45%) of the 195 respondents specialized in medical oncology. Thirty percent of physicians reported seeing more than 100 patients per week, and 50% reported seeing 26 to 50 patients per week. But 5% reported never having an LGBTQ patient, approximately 47% believed that 1% to 5% of their patients identified as LGBTQ, and 14% were unsure.
Fifty-three percent of respondents were aware that human papillomavirus–associated cervical dysplasia can be present in women who have never had sex with men, and 55% were aware that lesbians have greater risk factors for breast cancer. About 6% answered correctly that gay men have increased sun-seeking behaviors, and 30% answered correctly that transgender people are more likely to be uninsured. There were also large numbers of physicians who responded “Do not know” or “Prefer not to answer,” she noted.
Physicians were asked a series of questions about their comfort level treating this population and if they felt it was important to know SOGI status. The majority of respondents (75.8%) felt comfortable treating LGB patients, but fewer physicians (43.6%) felt comfortable treating transgender patients. “What’s interesting is that the vast majority of physicians agreed that they assumed their patients were heterosexual and did not ask,” said Dr Quinn. “It’s also interesting that many wanted to have mandatory education to increase their knowledge.”
Knowledge of the unique health needs of the LGBTQ community will lead to better care of this population. The Association of American Medical Colleges guidelines states that “unrecognized homosexuality by the physician or the patient’s reluctance to report his or her sexual orientation and behavior can lead to failure to screen, diagnose, or treat important medical problems.”
According to Dr Quinn, the US healthcare system is in the “denial stage” of collecting SOGI data, and there is still wondering on the part of all parties as to why and how these data should be collected. “But many of the open-ended comments we received from patients expressed the same sentiment: ‘It is important for my doctor to know me and the whole of me, but if you don’t ask me, I’m not going to tell you,’” she said.