Commentary
Article
NeuroVoices: William L. Conte, MD, MS, on Improving Care for LGBTQ+ Patients With Multiple Sclerosis
The head of the MS Center at Methodist Hospitals discussed the need for inclusive and affirming healthcare practices for patients with multiple sclerosis who identify as LGBTQ+.
William L. Conte, MD, MS
(Credit: Methodist Hospitals)
Patients living with multiple sclerosis (MS) who identify as lesbian, gay, bisexual, transgender, queer or questioning, plus other identities (LGBTQ+) have reported less favorable healthcare experiences and poorer overall health compared with cisgendered heterosexual patients with MS.1 This MS patient population may experience further challenges in addition to managing their disease such as psychological or emotional problems, and an increased risk of comorbid diseases and substance abuse. Thus, addressing the challenges and unmet needs of LGBTQ+ individuals with MS could help resolve health disparities in their quality of care and improve their health outcomes.
William L. Conte, MD, MS, head of the MS Center at Methodist Hospitals and an adjunct clinical assistant professor of neurology at Indiana University School of Medicine, presented at talk on MS in LGBTQ+ populations in a session at the 2024 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, held May 29 to June 1, in Nashville, Tennessee. The session comprised of experts in MS who spoke about understanding needs and improving outcomes in MS underserved populations. In addition, the session covered social determinants of health, MS in ethnic minority populations, MS in men, and MS across the lifespan.
Conte sat down with NeurologyLive® in an interview in honor of Pride Month, held June 2024, to discuss how healthcare providers can create a more inclusive environment for their patients with MS who identify in the LGBTQ+ population. In a new iteration of NeuroVoices, he also talked about the specific challenges that LGBTQ+ patients with MS face in terms of health disparities. Furthermore, Conte spoke about the significant gap between patients in their desire to disclose their LGBTQ+ identity to their healthcare providers and healthcare professionals' perceptions of this type of disclosure.
NeurologyLive: Could you provide an overview of your presentation on LGBTQ+ patient populations in MS?
William L. Conte, MD, MS: June is the beginning of Pride Month, and this morning [at CMSC], I did a presentation on the care of patients with MS who identify as LGBTQ+. The presentation, which I've given a few times now in different iterations, focused on educating healthcare professionals on the care of these patients. First, I started by discussing terminology, including the difference between sexual orientation and gender identity as well as the continuum of gender identity and sexual orientation, since there are unlimited orientations and gender identities. Then, I talked about health disparities that LGBTQ+ people face in general terms, which are not just specific to patients with MS.
LGBTQ+ people face health disparities because of minority stress theory, which is applied to many minority groups. The theory suggests that the stress of being a minority causes health disparities—it's a very complicated process. Then, I discussed how gender-affirming hormone therapy could potentially affect patients with MS. I educated attendees on masculinizing and feminizing gender-affirming hormone therapy. I also highlighted the limited data available about MS patients who are transgender; there is really just one paper on this.
Next, I reviewed the existing literature on LGBTQ+ patients with MS and the amount of research on this topic. I concluded on a positive note by discussing a call to research and action, outlining what future directives should look like, what people can do now to care for patients with MS who identify as LGBTQ+, and what steps should be taken next.
What advice would you give to clinicians who see these patients?
One thing I discussed is the disclosure of LGBTQ+ identity by patients to their healthcare providers. Research has shown that patients want to disclose this information, but healthcare professionals often think their patients do not want to. There's research indicating that about 10% of healthcare professionals think patients do not want to disclose, but 80% of patients do want to disclose their queer identity. So, there's a significant gap between awareness among clinicians and what patients actually want to disclose to them.
My advice to clinicians is to have more open awareness on this topic, approach with curiosity about these patients, and avoid preconceived notions. Listen to the patients. One thing I also mentioned is that affirming healthcare is a protector against minority stress theory. As healthcare professionals, we have the opportunity to protect against minority stress for these patients by providing them with affirming care.
Although you spoke about patients with MS who identify as LGBTQ+, what about the healthcare providers who also identify with this community?
It's an interesting topic. I identify as a gay man, and I’m vocal about that to my patients. I've disclosed this to them, and it doesn't have to be an awkward thing. It's similar to how people ask about your personal life. It can be as simple as saying, 'me and my husband are going on vacation,' and that's the disclosure right there.
I think it's very powerful to disclose this to patients, especially for those in the same minority group. I've had patients tell me they couldn’t believe I disclosed this to them in my position as a provider. Patients see clinicians in a high position of power, and it's affirming for them to see that type of representation in the clinic. Obviously, we want to protect ourselves in a safe way, but I think it's beneficial to discuss if healthcare professionals are comfortable with it. There's a fine line between disclosure and disclosing too much personal information, and it should be a fine balance that's individualized. Just as we should take an individualized approach to patient care, we should also individualize our disclosures as healthcare professionals.
What are your thoughts on representation and queer disclosure in the healthcare workforce?
Yeah, it's a touchy subject. At worst, discrimination still happens in healthcare settings, organizations, and among professionals, and at the very least, microaggressions are quite common. To that, I say, if you're in a place where you're being discriminated against, you shouldn’t be there. It would be good to find out if there are discriminatory practices early on in the process. But overall, we've come a long way these days. I can't speak for everyone, but that's been my experience.
One thing I also want to mention is that in patient care, MS is a unique disease state where there's a long-term relationship. There's a lot of trust that goes both ways between providers and the patients. It's not like a one-year process; it's a lifelong disease. This makes it unique because we need these long-term relationships to develop a trusting relationship. Patients who face healthcare disparities because of their orientation and gender identity need to be known so we can address their care needs.
Do you have any closing remarks on the topic of LGBTQ+ identity in the field of MS?
My main point is that there's so little research on this topic. A lot of research focuses on racial minorities, which is great, but we need more research on LGBTQ+ issues. One problem is that even in 2024, there are no clinical trials for new drugs that collect information about sexual orientation and gender identity. Phase 3 trials in the demographic section typically only ask about race, ethnicity, and age—nothing about orientation and gender identity. Some might argue that it doesn't matter, but I say we need to find out about this information. I've read all the papers on this topic, and there are only 3 or 4 in total. Therefore, more research is needed to see if there are differences in care among these patients so we can address them as providers.
Transcript edited for clarity. Click here for more coverage of CMSC 2024.
