TRANSCRIPT ID 4349 I 090324: Rohan Patel - Caring for Sexual and Gender Minority Patients with Genitourinary Cancer: A Primer for Inclusive Practices
Rohan Patel: Thanks for having me, really appreciate it. Thank you again for having me. I really appreciate it. Again, my name is Rohan Patel. I'm a resident in radiation oncology at the Seidman Cancer Center here in Cleveland, Ohio at Case Western. And I'm really excited to be talking a little bit more about primers for inclusive practices for patients who are sexual and gender minorities with genitourinary cancers. And really, when we're thinking about sexual and gender minorities, it's really important to understand what each of these terms really encompasses. Sex assigned at birth involves the sex assigned by a physician at birth based on the phenotypic characteristics of a baby's genitalia, while gender identity is really that sense of oneself in relation to their gender not always corresponding to their sex assigned at birth.
And sexual orientation, in contrast, really relates to the emotional, romantic, and/or sexual feelings towards other people or no people at all. And gender expression in general is really that outward expression of one's gender to others. And when we're thinking about sexual and gender minorities, which encompasses those within the LGBTQIA2+ community, SGM patients represent nearly 7% of the US population, which translates to nearly 41,000 annual genitourinary cases of cancer in the United States. SGM patients in particular experience higher rates of homelessness, substance use, cigarette smoking, depression, and anxiety, which really factor into their overall health and health access. And really, these stigmas increase cancer risk and comorbidities, and delays in diagnosis and treatments among SGM individuals really further exacerbate poor health outcomes.
And really, when we're thinking about treating patients with genitourinary cancers, we really need to think that one size should not fit all. There's really a critical need for care models that integrate both the clinical and psychosocial aspects of care for SGM patients. This includes not only medical treatments but also mental health support, counseling on gender-affirming treatments, and the creation of a supportive healthcare environment. So when thinking about the clinical considerations when it comes to evaluation, treatment, and follow-up, we have to implement an organ-based inventory, which really is a tool that aids in discussion of the anatomy of a person that documents the presence, absence, or modification of a patient's organs, really regardless of their gender identity.
We have to think about that, just because someone is a woman, we make assumptions that they have a uterus, when oftentimes that's not the case, whether it was surgically modified or was not there in the first place. And when it comes to evaluation of patients, there are gender-affirming hormone therapies that really aid and impact their cancer-related risks, and we need to evaluate that on the initial assessment. And there are psychosocial impacts when we're considering discontinuing GAHTs in relation to their oncologic treatment, and we need to have shared decision-making with our patients. When thinking about the physical examination of patients, transgender individuals or intersex individuals have different modifications that may happen. For transgender patients, there are gender-affirming surgeries such as neovagina or neophallus that change the way we do our physical exams. And with intersex individuals, there are unique anatomical variations and complex surgical histories. So we need to have more of an individualized diagnostic or follow-up approach.
For example, a prostate examination in a trans female patient may require palpation through a neovaginal canal rather than the rectum. And for a trans male patient, the transurethral endoscopy may require a smaller caliber cystoscope because of the urethral caliber that is present. When really thinking about pre- and post-treatment assessment tools, things like SHIM and FSFI are common tools that are really used for cisgender or heterosexual individuals, and we really need to tailor it appropriately based off of sexual behaviors for our SGM patients. There are other supplemental tools that we can use such as TM-SFI, SFI-GS, that can open up conversations for gender minorities. And when assessing post-treatment patient-reported outcomes, PROMIS or SF-36 can be complemented with other tools such as SMACS, BCI, and EPIC. And when we're thinking about a patient-centered care approach, early referrals to palliative care, oncofertility, onco-psych, as well as social workers who care for SGM individuals are necessary.
When thinking about the non-clinical considerations, we need to be inclusive in the clinic. The LGBTQ primary care toolkit really has key recommendations on increasing access for SGM patients such as adoption of SGM-affirmative policies, creating a welcoming environment, documenting SOGI, training all employees in cultural competency for SGM patients, and increasing high-quality services. When you really think about what welcoming environments we can include in our clinic, things like signage that demonstrate allyship, whether it's SGM-friendly symbols or even gender-neutral bathrooms, or using non-assumptive language as well as whatever patients provide for their name and pronouns, we use that in our care.
Brochures and pamphlets can be grabbed from ASCO's cancer.org or the National LGBTQ Cancer Network that really have diverse individuals or SGMs included and are available in multiple languages. And when we're documenting sexual orientation and gender identity, SOGI data collection should be happening within our health records and it can be adapted from the California Health Interview Survey Cognitive Pretest Report. And that integration of SOGI should be happening in our treatment planning, our research, and our clinical trials so that we can align SGM patients better with their values as well as quality of life objectives.
Implementing these practices takes work, but really the intentional inclusion of SOGI in the care for our SGM patients who have genitourinary cancers really increases patient-provider engagement. Ninety percent to 94% of patients overall are actually comfortable sharing SOGI information. Really, the key barriers are system-level or provider-based. Missteps can happen. Misgendering patients or neglecting a thorough organ-based inventory can occur, and SGM patients are appreciative of any attempts. And actually, 85% of SGM patients report positive impacts even with minimal effort. Education and training can happen both in-house or from outside, from nationally recognized organizations like Human Rights Campaign or the National LGBTQ Cancer Network to provide cultural humility training for our staff. And really, we need to advocate for institutional change, advocating for policies like SOGI data collection, inclusive language training, and the creation of multi-D care teams.
In our paper, we give a very straightforward and simple way of organizing in different ways on the recommendations for different areas that can be implemented very easily and is also cost-effective. And I want to give special thanks to my co-authors, Dr. Chen, Dr. Sun, and Dr. Zaorsky, as well as other people like Dr. Dickstein, Dr. Spratt, but especially all my patients, the Journal of Urologic Oncology, and Talwar, and UroToday. These are my references and thank you so much.
Ruchika Talwar: Thanks, Dr. Patel, I really enjoyed reading the primer that you and your co-authors had put out. I think there is a huge knowledge gap in this area, and this is a great first step in ensuring that clinicians have access to what the standard should be.
Now, one number that you said that really struck me was that over 90% of patients are comfortable sharing information about their gender identity. And I think you're right, a lot of the hesitation is on the provider side. I think there are really well-intentioned urologic oncologists, radiation oncologists, who just want to make sure that patients feel comfortable, and perhaps even asking about a patient's gender identity or sexual orientation in a politically charged climate can cause pause. But I was just wondering, what is your advice to clinicians who might have that sort of hesitation and who really haven't received any training, who read your primer and say, "This all sounds great. I'd love to take the first step. I just don't even know where to start"?
Rohan Patel: Yeah. I think it's such a tough situation when we're in such a climate where we become hesitant, we want to be politically correct. But I think the first thing that we have to recognize is that if there's at least one patient that is of a sexual or gender minority, we need to take steps to be more inclusive. That is kind of what starts in my mind as a way to say we need to push for more inclusivity within our clinic.
And really, when it comes to asking sensitive questions, a lot of times our nurse partners, as well as other members in our staff, actually have a really great way of opening up these conversations. Whether there's family members in the room with our patients or whether we need to remove them, we recognize that we ask very intimate questions about sexual behavior very routinely in GU oncology. And so I think this is just one extra step that needs to happen. And I do think that with time, it actually is very easily attainable. Once patients recognize that it's being asked for everyone, it is confidential, and they're allowed to not disclose if they do not wish to disclose, those are ways that make those fears that maybe providers or system level may have really change their minds because as long as we're asking, we're directly being inclusive for our patients.
Ruchika Talwar: Yeah, great point. And then as we wrap up here, I'm curious, do you have any other recommended resources that you'd suggest that our urologic oncology community take a look at in regards to this topic?
Rohan Patel: I personally think, to be honest, the way to start is really the National LGBTQ Cancer Network or ASCO's cancer.org. Although those are two very broad, and I'm only referencing two even in the presentation, they actually have resources for other organizations through them that's really tailored to patients who are sexual and gender minorities with cancer. I think that's a great way to start to be able to understand what other methods are available. And the National LGBTQ Cancer Network actually has even informational material that is available to print for patients, as well as providers, so that we continue to have inclusive things within the clinic.
Ruchika Talwar: Yeah, that's great. Well, thank you so much for your time and sharing your expertise on this really important topic. This is obviously just a start in the right direction. There certainly is a lot more work that needs to be done, but we really appreciate you getting the conversation started.
Rohan Patel: Absolutely. Thank you so much for having me.
Ruchika Talwar: And to our audience, thanks again for tuning in. We'll see you next time.