In this interview we discuss the approach to treating cancer in lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients.
As part of our coverage of the American Society of Clinical Oncology (ASCO) Quality Care Symposium, held March 3–4 in Orlando, Florida, we are speaking with Gwendolyn Quinn, PhD, who studies health outcomes of cancer patients to improve patient care and quality of life at Moffitt Cancer Center in Tampa, Florida. At the meeting, Dr. Quinn spoke about approaching cancer treatment for lesbian, gay, bisexual, transgender, and queer (LGBTQ) individuals.
-Interviewed by Anna Azvolinsky
Cancer Network: What do we know about how sexual orientation and/or gender identity information could help clinicians provide better care, or whether it could be a hindrance to better care in some cases? And is it typical for patients to disclose this type of information, specifically to their oncologists?
Dr. Quinn: It’s probably not standard for people to be asked this question at the institutional level or by their oncology or healthcare provider. It is certainly important on an individual level, because it improves the care that can be offered and helps identify risks and need for support services and specialized services based on the disclosure of sexual orientation or gender identity. Collecting this information from an institutional perspective also helps give a voice to this community, because they certainly are not well characterized in research. Very few national databases-including none of the SEER sites, which are national cancer registries-collect this information, so it can be challenging to give people data on outcomes related to sexual orientation and gender identity, particularly for the transgender population. We don’t have accurate counts or good information on the impact of hormonal therapy in relation to cancer and cancer survivorship.
Cancer Network: Do you see clinicians who feel that this information is irrelevant to the care they provide their patients? Is that an educational process that needs to happen?
Dr. Quinn: That is definitely something that is changing. People who went to medical school in the 1970s and 1980s probably didn’t get any education on the topic of sexual orientation and gender identity (often called sexual and gender minorities). People who went to school in the 2000s and now are currently getting at least 5 to 8 hours of this, so there is going to be a shift in the training of the clinical workforce. What goes hand in hand with that is that older patients have probably spent a lifetime of feeling that there is not a safe way to disclose this information, or opportunities to disclose this. And older physicians tend to think that they don't need this information and that they in fact say, “Well, I treat all of my patients the same, I don’t need to know this.” But this is in direct violation of the American Medical Association’s guidelines for physicians, which say that a lack of creating an environment for safe disclosure is akin to a screen failure, and that it’s important to know this in the same way that it’s important to take a social history of your patient.
Cancer Network: Where do you see the need for improvement in how clinicians and oncologists specifically could be more sensitive toward and have better communication with their LGBTQ patients?
Dr. Quinn: I think some of this is starting with intake forms and using the best language as well as creating an inclusive environment for collecting this information. The Fenway Institute puts out guidelines for how to ask about sexual orientation and gender identity and when to ask for it in the course of completing intake forms. That is one start. The other is the inclusive environment. There are certain signs-such as the Human Rights Initiative and for example, in our case in Florida, a Quality Florida sign-and symbols that help the members of sexual and gender minority communities know that the environment is friendly. Probably the most important thing is that it’s not just important to train clinicians to create safe environments, but the entire institution-from the person who greets you at the door to the nurses and other staff-all have to be trained in sensitivity regarding sexual and gender minorities.
Cancer Network: You and your colleagues have done studies and surveys of healthcare providers and their attitude toward LGBTQ individuals and also specific needs of these patients. What is something surprising or noteworthy to highlight from this work?
Dr. Quinn: A couple of things are surprising. One of the questions we asked in a national survey of oncologists who are affiliated with National Cancer Institute–designated cancer centers was the estimates of their population who identified as LGBTQ. They are identifying very small numbers and quite a few said that they have zero such patients, which really wouldn’t fit with the national data that say that at least 3% to 12% of the population identify as being in one of those categories. That really underscores the idea that this information is not being asked for or collected, so they don’t have an idea which of their patients are LGBTQ.
It was also interesting that many physicians, regardless of the number of years since they have been trained, wanted additional training. They didn’t want it to be mandatory, but they wanted this training to be available, particularly specialized to the oncology world. There are some great training programs out there, but they kind of just touch on cancer as an example and the care of cancer patients is really unique based on the site of the cancer. A lot of that needs to be tailored to the LGBTQ cancer patients based on the cancer type and site-that is interesting.
In another portion of the survey we asked people about their comfort in treating these patients. We separated out lesbian, gay, and bisexual from transgender individuals, and asked about physicians’ comfort in treating those two populations. Many people ranked themselves very high in being comfortable in treating LGB patients, but less so in treating transgender patients. As the survey went on and we asked a series of knowledge, attitude, and practice behavior questions, and then repeated those questions again, the level of comfort went down considerably. My take on that is that a lot of physicians didn’t know a lot of those knowledge questions, and being asked them and kind of being forced to make decisions about attitudes and to describe practice behaviors, they began to realize, “I really don’t modify my practice and am not as knowledgeable about the needs of this community as I could be.” And fortunately, as I mentioned, they were interested in receiving training.
Cancer Network: And just lastly, on the training programs, especially for those clinicians that have been in the field for a long time but were never exposed to any kind of awareness or sensitivity training in medical school, are there training programs already that are going on locally or on the national level?
Dr. Quinn: We are trying to develop one at our cancer center and we are also exploring how specific this training needs to be for institutions. There is a culture and a flow to every practice, so perhaps what we create is not necessarily generalizable to other practices so we are working on taking some programs that exist through the LGBTQ cancer network and other places and modify them for the oncology community. And then we want to test them with other practice types and see how well they work.
Cancer Network: Thank you so much for joining us today, Dr. Quinn.
Dr. Quinn: Thank you!