Abstract
In general, individuals who are lesbian, gay, bisexual, transgender, queer or questioning, plus other identities (LGBTQ+) living with multiple sclerosis (MS) have less favorable healthcare experiences and poorer overall health than cisgendered heterosexual individuals. They may experience further challenges in addition to managing their MS, including psychological or emotional problems, and an increased risk of comorbid diseases and substance abuse. Transgender individuals specifically face additional unique challenges, including high rates of mental health distress and effects from long-term exogenous hormone use and gender affirmation surgery. These findings highlight disparities in both quality of care and health outcomes of LGBTQ+ individuals. Unmet needs and drivers of these disparities relate to a lack of inclusivity in healthcare environments, poor communication between healthcare professionals (HCPs) and LGBTQ+ patients, inadequate HCP knowledge of LGBTQ+ health issues, and gaps in research into the impact of sexual orientation and gender identity in MS. Although data are limited, recommendations to improve the experience and care of LGBTQ+ individuals with MS include increasing HCP awareness of the challenges LGBTQ+ individuals face and provision of inclusive care, with the overarching goal for HCPs to be allies to the LGBTQ+ community. Improvements may be achieved through diversity and cultural awareness training of HCPs on sexual orientation and gender identity, and ensuring a friendly, open, and supportive healthcare environment. Use of sensitive and gender-neutral language by HCPs, representation of LGBTQ+ individuals in patient materials, and access to LGBTQ+ MS support groups are also recommended. HCPs should aim to integrate discussion of sexual orientation and gender identity and sexual and mental health into routine assessments and collaborate with other HCPs as needed. By addressing the challenges and unmet needs of LGBTQ+ individuals with MS, this should help resolve disparities in their quality of care and improve their overall health.
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Lesbian, gay, bisexual, transgender, queer or questioning, plus other gender identities (LGBTQ+) individuals living with multiple sclerosis (MS) generally have negative healthcare experiences and poorer health outcomes than cisgendered heterosexual individuals. |
These disparities relate to a lack of inclusivity in healthcare, poor communication, and inadequate knowledge of LGBTQ+ health issues by healthcare professionals, and gaps in research on sexual orientation and gender identity. |
Recommendations to improve the experience and care of LGBTQ+ individuals living with MS include increasing healthcare professional awareness of these issues and steps to ensure the provision of inclusive care. |
US healthcare professionals need to be allies to the LGBTQ+ community to help address disparities in quality of care and overall health. |
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Podcast Transcript
Introduction
Mark Cascione (MC): Hello, and welcome to our podcast discussing the challenges and recommendations to address the unmet needs of people identifying as lesbian, gay, bisexual, transgender, queer, questioning, or other identities who are living with multiple sclerosis, or MS. My name is Dr. Mark Cascione. I’m the medical director of the South Tampa MS Center and vice president of Axiom Clinical Research here in Tampa and a part of First Choice Neurology and Tampa Neurology Associates. On this podcast, I’ll be joined by two of my wonderful colleagues, Dr. William Conte and Dr. Amy Sullivan.
William L. Conte (WLC): Thanks, Dr. Cascione. My name is Dr. William Conte. I’m an MS specialist at Methodist Hospitals in Merrillville, Indiana. I’m also an assistant professor of neurology at Indiana University.
Amy B. Sullivan (ABS): And I’m so pleased to be here with both of you today. My name is Dr. Amy Sullivan. I am an associate professor of medicine at the Cleveland Clinic Lerner College of Medicine. I also direct the section of Behavioral Medicine and Research at the Mellen Center for Multiple Sclerosis at Cleveland Clinic. And I am the Director of Engagement and Well-Being as well as Diversity Leadership in the Neurological Institute at Cleveland Clinic.
MC: It’s great here to be with you guys. So first, let’s start off by defining the terms that we’re going to be using in the podcast. So, most people who are listening may be somewhat familiar, but just to set it clear, LGBTQ+ refers to lesbian, gay, bisexual, transgender, queer or questioning, plus other identities. Now, sex describes biologically and physiologically defined characteristics, whereas gender describes socially constructed characteristics [1]. Now, the objectives of the podcast today are to increase awareness and provide listeners with an overview of the healthcare experiences of LGBTQ+ individuals with MS to describe the challenges and unmet needs faced by LGBTQ+ individuals with MS and summarize the current recommendations to address these challenges and unmet needs. I want to highlight the main points we’ll cover in the podcast. In general, LGBTQ+ individuals living with MS have less favorable healthcare experiences and poorer healthcare outcomes than cisgendered heterosexual individuals. Among those with MS, LGBTQ+ individuals experience further challenges in addition to managing their MS. Now, in response, a number of strategies could improve the experience and care of LGBTQ+ individuals living with MS, although data in this area are limited. Now, the overarching goal is for US healthcare professionals to be allies to the LGBTQ+ community and to help address the disparities in their quality of care and their overall health. So first, Dr. Conte, what’s known about the general healthcare experiences of LGBTQ+ individuals?
Healthcare Experiences of LGBTQ+ Individuals with MS
WLC: Well, many LGBTQ+ individuals have negative experiences with the healthcare system, resulting in disparities in their quality of care compared with cisgendered heterosexual individuals. For instance, several US-based studies of LGBTQ+ individuals have highlighted a number of issues [2,3,4,5]. First, despite there being no difference in health insurance status between LGBTQ+ people and cisgender heterosexual people, LGBTQ+ individuals were less likely to have a usual place of care [5], have access to medical care due to costs [2, 3, 5], and be satisfied with their care [2]. This disconnect between health insurance status and utilization may be related to out-of-pocket costs or the economic stability of the individual survey [2]. Second, these studies also found that there were healthcare disparities related to sexual orientation and gender identity within racial and ethnic groups [4]. For instance, LGBTQ+ individuals had worse health behavior and outcomes and poorer healthcare access and utilization than heterosexual individuals of the same race or ethnicity, or White individuals [4]. Now, a national survey in England with two million respondents also showed that lesbian/gay/bisexual individuals were more likely than heterosexual individuals to have poor healthcare experiences, including poor trust, confidence, and communication with the physician or nurse, and overall satisfaction with care [6]. Indeed, issues around quality of care and patient psychological safety are often related to poor communication between healthcare professionals and LGBTQ+ patients [7].
MC: Thanks, Dr. Conte. Hey, Dr. Sullivan, can you provide some insights into the healthcare experiences of LGBTQ+ individuals with MS in the United States?
ABS: Yeah, I think that’s important to do. So many LGBTQ+ individuals with MS have negative experiences within healthcare in the United States, but there are very few studies specifically in the MS population. One I’d like to point out is a survey from the North American Research Committee on Multiple Sclerosis Registry or the NARCOMS Registry. In this, they found that approximately 5% of US individuals with MS identified as being LGBTQ+ and 0.4% identified as transgender [8]. In fact, these figures are similar to those for the overall US population [9,10,11]. This also aligns with surveys from the United States, Western Europe, and Brazil in which up to 0.5% of adults identified as transgender [12]. This increased up to 2.7% among children and adolescents [12]. The NARCOMS Registry survey mentioned earlier also looked at healthcare resource utilization. They found that although healthcare resource utilization did not differ by gender or sexual orientation, LGBTQ+ individuals were less comfortable discussing sexual health and were less satisfied with their clinician than their heterosexual counterparts [8].
MC: So, this really does go back to the communication issues we mentioned earlier. These individuals are utilizing healthcare resources, but they might not have felt so comfortable in doing so.
ABS: That’s right. So similarly, a small US survey of 26 LGBTQ+ individuals with MS found that despite a high overall satisfaction with care, those who were dissatisfied with their care reported that clinicians were dismissive of their questions [13]. In addition, an Italian web-based survey compared the experiences of 35 LGBTQ+ patients with those of heterosexual patients, and they found that LGBTQ+ patients were more likely to change their MS treatment center, to access a higher number of different centers, and to have fewer visits to psychological services [14]. Those individuals reported lower levels of staff friendliness at MS centers [14]. In fact, 30 of these 35 people had experienced homophobic behavior from center staff or gender discrimination by a clinician [14]. This homophobic behavior was linked to changing MS treatment centers and negatively associated with the friendliness of the MS center staff [14].
MC: Wow. So, it seems that this lack of communication is potentially leading to a lack of understanding with the healthcare providers for those LGBTQ+ patients, and it’s really important for their care that we help bridge that.
ABS: Yeah, absolutely.
Challenges and Unmet Needs for LGBTQ+ Individuals with MS
MC: Dr. Conte, could you describe some of the challenges faced by LGBTQ+ individuals with MS?
WLC: Well, several studies have found health disparities between LGBTQ+ populations and the general populations. For instance, LGBTQ+ individuals are more likely to experience poor overall health [3, 6, 15], more psychological or emotional problems, and poor mental health than heterosexual individuals [5, 6, 15]. In fact, transgender individuals have high rates of psychological distress, which can affect around 4 in 10, compared with only 1 in 20 in the general population [16]. These individuals also have a 40% lifetime suicide attempt rate, which is nine times the rate of the general US population [16].
MC: So that’s a big disparity in the numbers right there.
WLC: Yes, it is. It’s important to note that when we talk about psychological or emotional problems, they are not related to being sexual minority in itself; there is no underlying pathology. Instead, sexual minorities and gender minorities experience society in a different way and face societal biases against them, both of which increase psychological distress. Now, bisexual individuals, in particular bisexual women, have the highest rate of psychological or emotional problems, higher than lesbian women and gay men, and much higher than heterosexual women and men [5, 6, 15]. This illustrates the impact of the societal experiences on these women.
MC: So, it appears that bisexual women may have even more issues than lesbian women and gay men?
WLC: Yes, LGBTQ+ individuals are more likely to have comorbid diseases than their heterosexual counterparts [2, 3]. For example, two studies have found that sexual minority individuals, and especially lesbian women, had more chronic health conditions and functional limitations than heterosexual men and women [2, 3]. And we see that comorbidities can affect the risk and prognosis of MS [17], so it’s important that the higher rates of comorbidities in LGBTQ+ individuals are recognized. Also, a few studies have found that LGBTQ+ individuals are at a greater risk of substance abuse [16, 18, 19]. In particular, transgender youths have the highest rates of substance abuse [16], and we also see that with bisexual and lesbian women [18, 19].
MC: Dr. Sullivan, could you please expand on this topic that Dr. Conte was speaking of and describe the specific challenges faced by individuals with MS who identify as transgender?
ABS: Yeah, absolutely. So, we found that transgender individuals with MS may have additional unique challenges [16]. So, this is actually a work that I worked on. And although standards of care for transgender individuals health exist [12], there’s a lack of practice guidelines for the transgender MS population [16]. So, as already highlighted, young people who are transgender may experience particularly high rates of mental health distress, including depression, anxiety, suicidality, and substance abuse [16]. Also, we don’t yet know the effect of long-term exogenous hormones on MS, but they may impact the clinical course and exacerbate the disease [16]. We need more studies on the potential immunological effects of gender affirming surgery on MS and other immune-related conditions [20]. Additionally, a 2016 study in Multiple Sclerosis Journal found a possible association between male to female transition and the development of MS [21]. There were four observed cases in their study population, whereas only 0.6 cases would be expected, which gave an adjusted rate ratio of 6.6. The authors concluded that this association between male gender identity disorders and MS supports a possible role of low testosterone or feminizing hormones on MS risk [21]. It is worth bearing in mind that gender affirmation surgery may increase the incidence of common MS symptoms, such as urinary hesitation and frequent urinary tract infections [16].
MC: That’s very interesting. Dr. Conte, what are the unmet needs and drivers of the health and healthcare disparities in the LGBTQ+ population?
WLC: Inclusivity in healthcare environments is vital to competent care [16]. Therefore, a lack of inclusivity in healthcare may deter patients from seeking adequate and timely treatment. For instance, there was one study where a third of LGBTQ+ individuals with MS stated they would like the healthcare system to be more inclusive [13]. As highlighted earlier, issues of quality of care and patient psychological safety are often related to poor communication between healthcare professionals and LGBTQ+ patients [7]. Additionally, healthcare professionals may lack knowledge of the various LGBTQ+ health issues, and also, they may presume patients are heterosexual if not told otherwise [22]. However, there are gaps in research and understanding of health disparities related to sexual orientation and gender identity MS, as well as in the wider field of neurology [23]. It is important that sexual orientation and gender identity data are consistently collected in clinical trials and electronic health records so we can address the health disparities seen in the LGBTQ+ population. However, collection and documentation of these data remain low [24], despite members of both the heterosexual and LGBTQ+ communities being willing to answer questions on sexual orientation and gender identity [25]. A survey of the American Academy of Neurology member neurologists found that although the majority of responding neurologists felt comfortable assessing LGBTQ+ patients, over a third did not believe sexual orientation and gender identity were determinants of health, and a third would not tailor their care based on the patient’s LGBTQ+ identity [26]. Moreover, two-fifths believe that sexual orientation and gender identity have no impact on managing neurologic illnesses [26].
Recommendations to Address the Challenges and Unmet Needs for LGBTQ+ Individuals with MS
MC: Wow, those high numbers are really a wake-up call. All right, so moving on to the potential solutions, Dr. Sullivan, could you please provide an overview of some of the current recommendations to address the challenges and unmet needs for the LGBTQ+ individuals who have MS?
ABS: Yeah, absolutely. I’d be happy to. So, from both clinical and societal perspectives, we need to have recommendations or practice points to address the unmet needs of the LGBTQ+ population. Data are currently limited, but there are recommendations that I’d like to give. These include increasing the awareness of the challenges that LGBTQ+ individuals face in obtaining quality care from the healthcare professionals [8, 14]. This includes considering the different aspects that form sexual orientation and gender identity, namely gender identification, role in expression and sexual attraction, and sexual behavior [27]. Diversity training is hugely important to ensure high-quality care for LGBTQ+ patients [16, 26, 28]. We also need to ensure that the entire healthcare team provides inclusive, friendly, open, and supportive care. This helps to create a comfortable environment for the LGBTQ+ patient. This includes using open-ended questions to ask about partner status in living situations [8]. We can also encourage diverse representation in patient education materials and seminars, including the description of LGBTQ+ individuals to ensure they are culturally sensitive and inclusive [13, 16]. Additionally, I think the creation of specific LGBTQ+ MS support groups can also help address the unmet needs of this community [13]. I’m a huge proponent of support groups. The numbers of LGBTQ+ patients with MS are obviously not as high as for the MS community in general, so support from a national society such as the National MS Society could help expand the reach of LGBTQ+ MS support groups.
MC: Yeah, LGBTQ+ MS support groups will probably take a more concerted effort because the numbers are lower. Maybe we could get a good LGBTQ+ MS population together online for virtual meetings to begin with anyway. All right, so, Dr. Conte, what actions can we take as healthcare professionals to ensure inclusive, friendly, open, and supportive care for LGBTQ+ people living with MS?
WLC: Well, as healthcare professionals, we can integrate the disclosure of sexual orientation and gender identity into routine clinical assessments [22]. We can also use medical record systems to capture and track each patient’s preferred name, gender identity, pronouns, and sexual orientation [8]. We also need to screen the patient’s living arrangements, personal safety, and domestic violence as per screening of the MS population as a whole, and referring patients as needed [16]. We should engage the patient in a proactive discussion of sexual health [13]. It is also important that we carry out routine mental health screens of LGBTQ+ individuals, and also screen for substance abuse and refer patients for treatment as needed [16]. And we should also refer patients to specific LGBTQ+ MS support groups [13, 16], as we were just discussing, because these individuals may be less likely to interact with the wider LGBTQ+ community once they are diagnosed with MS, so having dedicated MS support groups for them is especially important.
MC: Dr. Sullivan, could you further expand on this topic in the context of transgender people living with MS?
ABS: There are specific recommendations for healthcare professionals treating transgender individuals with MS. First, we must be aware of the unique needs of a transgender individual [12, 16], and I think we’ve talked some about that in this podcast today. So, this can be achieved through cultural awareness training with particular focus on treating transgender individuals with dignity and respect [12]. And it’s sad that we even have to note that, right? That we should be treating them with dignity and respect. It’s of note also that the World Professional Association for Transgender Health has developed comprehensive standards of care to provide guidance to healthcare professionals treating transgender individuals [12]. Healthcare professionals also need to ensure care is inclusive by being sensitive and gender neutral [12, 13, 16]. We can do this by making sure that gender-neutral patient intake forms and gender-neutral healthcare facilities and bathrooms are available. We should use gender-neutral language until the patient’s pronouns are known and therefore use the agreed gender pronouns in discussions and medical documentations. It’s also important that we take a comprehensive history of prior surgery and oral contraceptive use and exogenous hormone use [12, 16], and connect people with a primary care provider when doing so [16]. Collaboration with gender management teams and referring patients as needed is also vital [16].
Conclusion
MC: Excellent. Thank you to my fellow colleagues for participating in today’s podcast. The three of us hope we have increased your awareness and provided an overview of the experiences of LGBTQ+ individuals with MS. We’ve also mentioned the current recommendations to address the challenges and unmet needs faced by these individuals. Based on our discussion today, the overarching goal in addressing the unmet needs in the LGBTQ+ patients with MS is for healthcare professionals to be allies to the community and to help address the disparities in their quality of care and their overall health. Now, this starts with communication and understanding, with diversity training, and the other topics we discussed. Thanks again.
ABS: Thanks so much for having us.
WLC: Thank you.
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This podcast and the journal’s Rapid Service Fee was funded by Novartis Pharmaceuticals Corporation. Authors had full control of the content and made the final decision on all aspects of this publication.
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Medical writing support was provided by Connie Lathe of Envision Pharma Group and was funded by Novartis Pharmaceuticals Corporation. This medical writing support included assisting authors with the development of the manuscript drafts and incorporation of comments. This manuscript was developed in accordance with Good Publication Practice (GPP3) guidelines.
Author Contributions
William L. Conte, Mark Cascione, and Amy B. Sullivan, all made substantial contributions to the manuscript concept/design, critically reviewed and revised the manuscript drafts, and provided final approval of the manuscript and enhanced content as submitted.
Disclosures
William L. Conte has received research funding from Novartis and Sanofi; consulting fees from AstraZeneca, Banner, Bayer, Biogen, Bristol Myers Squib, Genentech, Novartis, and Sanofi; and speaker fees from AbbVie, Alexion, Biogen, Bristol Myers Squib, EMD Serono, Genentech, Horizon, Janssen, Novartis, and Sanofi. Mark Cascione has received consulting fees from Biogen, EMD Serono, Genentech, Novartis, and Sanofi Genzyme; speaker fees from Acorda, Biogen, EMD Serono, Novartis, and Sanofi Genzyme; and grant support from Adamas, Biogen, Genentech, Novartis, and Sanofi Genzyme. Amy B. Sullivan has received consulting and speaker fees from Biogen, Bristol Myers Squibb, Genentech, and Novartis.
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Conte, W.L., Cascione, M. & Sullivan, A.B. Podcast on the Challenges and Recommendations to Address Unmet Needs in MS for LGBTQ+ Populations in the United States. Neurol Ther 12, 1399–1407 (2023). https://doi.org/10.1007/s40120-023-00506-4
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DOI: https://doi.org/10.1007/s40120-023-00506-4