Jillian Rose, PhD, MPH, LCSW, and Priscilla Toral, LCSW, on the Medical and Support Needs of Men With SLE
Men with systemic lupus erythematosus (SLE) seek medical attention and supportive care for their condition less than women. Additionally, data on the medical, psychosocial, and support needs of men with SLE are limited.
To address this, Jillian Rose, PhD, MPH, LCSW, and Priscilla Toral, LCSW, both from Hospital for Special Surgery (HSS), and colleagues administered a survey to identify self-reported needs and concerns of men with SLE.
Findings of the survey included the following: 76% of men reporting worrying more about their future since receiving a lupus diagnosis; 53% reported that SLE affects their sexual health; 52% reported receiving no support for their condition; and 50% of men reported that they were very likely or likely to participate in a male-only support group for SLE.
Rheumatology Consultant spoke with Jillian Rose and Priscilla Toral at the 2019 American College of Rheumatology (ACR)/Association of Rheumatology Professionals (ARP) Annual Meeting about the research.
Rheumatology Consultant: Why do you think men with SLE seek medical attention and care less than women?
Jillian Rose: Research shows, men tend to seek medical care less often than women and often delay seeking care even when experiencing serious illness across many disease spectra. That same concept applies to lupus care. Lupus is traditionally known as a woman’s disease, because it affects women 9 times more than it affects men. Therefore, men do not see themselves as people who develop this disease. The level of denial for having a chronic illness and accepting it is also increased among the male population. Whether it is about their masculine identity or their ability to relate to people who have this illness, men are often in denial about having this illness.
RHEUM CON: How can a rheumatologist approach management for a male patient who may be in denial about their condition?
Priscilla Toral: It is important to enhance patient‑doctor communication. Men are not necessarily going to volunteer specific information about their condition and how it impacts their daily life, especially as it relates to their sexual health. Findings further highlighted opportunities for physicians to be aware of important areas to assess in the medical visit as it relates to males living with lupus. For example, preparing good assessment questions about sexual health, mental health, and supportive care can go a long way. As an interprofessional team, we have a responsibility to gather important information and additional resources for the patients, even before the doctor‑patient communication takes place. Interestingly, several open-ended responses from men reported that marketing on the disease is geared towards women, such as the symbol for lupus, which is the butterfly. Men may not relate to butterflies, so the branding of the illness itself becomes a barrier, and it is not inviting for them to come forward and participate in a conversation.
RHEUM CON: Why was it necessary to conduct your study?
JR: In short, the deafening silence and absence of the voices of men with lupus in our programs motivated us to conduct this study. I have been the manager of the lupus support and education programs at HSS for 15 years. Throughout my career, I have seen plenty of women come to receive care, participate in our educational lectures, and support and education groups, but only a few men. The men would come and get a lot of good information from a session to enhance their ability to cope with and better self-manage their illness, but they never returned. After that, I would see the men in the emergency room because of a flare-up or because they had questions about their condition. We conducted the study because we wanted to better understand the barriers to their engagement in care and support and education groups, since the problem appeared to be unfolding right in front of us. While we have the resources available, we are missing the mark somewhere for this patient population.
PT: In 2016, we conducted a pilot evaluation with 10 men with SLE, who participated in semi-structured 30 minute phone interviews consisting of 6 scripted open‑ended questions. We gathered a lot of information about what their unmet and specific needs were. This evaluation really laid the foundation for which prompted us to conduct this larger study, to better understand the specific medical, psychosocial and support needs of males living with lupus.
RHEUM CON: What do you think is the biggest barrier to care for men with lupus?
JR: The biggest barrier is the patient being able to openly communicate and relate to their clinician. From the experiences that we heard from the men in our study, as well as in our experience working with patients with lupus, men with lupus often shared frustration with the unpredictability and invisibility of the illness, that often lead to inability or limited ability to work and perform intense physical exercise. This was often linked to social expectations around masculinity and expectations as providers for their families. One participant in the study shared, "pain is weakness" and expressed concerns about sharing his pain with his physician, so it went untreated. There were certain questions that the men did not want to ask during the interaction with their doctor because they felt that it diminished their sense of identity as a man. They did not want to talk about sex; however, erectile dysfunction was one of the biggest things that men with lupus struggled with, according to findings from our study, so this is a big issue. The men did, however, want the clinician to ask the questions and drive the conversation, because they believed if they brought up issues around sex and intimacy it would somehow diminish their masculinity.
RHEUM CON: How can a rheumatologist help a male patient feel more comfortable to talk about their condition?
PT: They can help by normalizing the condition and educating patients on the different national support and education services. There is often misrepresentation that these services are just for women, since more women are impacted by the illness, but these services are open to men, as well. I think normalizing those conversations from the very beginning and continuing to assess some of these unique issues that come up for a man, especially around the cultural, traditional, and gender norms, is very important. I would add that it is important to remember that you are a part of a larger team; you have nurses and social workers who are also available to support you in exploring the medical and psychosocial concerns of patients and linking them to support and education resources.
JR: I want rheumatologists to know that they are the drivers of these important conversations that need to be had with patients—they have to be able to be bold enough to bring them up. It is also important for them to understand the impact of lupus on mental health. In our study, we saw increased depression among men with SLE, however, most men in our study shared they did not share concerns about their emotional health with their clinicians Men with lupus are concerned about their quality of life, as well as their relationships with their spouses or partners. This can create a challenge and a level of stress regarding how to cope with the illness and how it affects their bodies. It is a vicious cycle. So, if we are not having those conversations, we cannot stop this cycle. Providing medications to treat lupus is a key part of caring for patients, however, not asking these questions could represent a failed opportunity to help to optimize care and help men with lupus better cope and self-manage their illness.
RHEUM CON: In the study, did ethnicity or race play a role in how comfortable a patient felt about talking to their clinician?
JR: Great question. I think this was one of the limitations of our study. Our sample was not diverse enough to allow for significant statistical analysis based on race. However, we did see similar trends regarding race in this study that we saw in our pilot study. Men who identified as African American/black or Hispanic/latino expressed more concerns around cultural norms and expectations related to their identity as, providers and protectors of their families. The cultural piece created a lot of tension in their ability to seek care, accept care, and have communication with their families or outside support programs. However, most participants in our study grappled with the question of “what does it mean to admit that I have a chronic illness?" and expressed concerns around being judged, stigmatized and marginalized by clinicians and family members.
PT: There is also an underrepresentation of minority populations in clinical research. This is an important point regarding the limitation of the study. Our team will work to ensure we engage minority populations who are impacted by this condition at higher rates.
Toral P, Tavera A, Irvine N, Horton R, Rose J. A national needs assessment of males with SLE: assessing medical, psychosocial, support & coping needs [abstract 1847]. Arthritis Rheumatol. 2019;71(suppl 10). Presented at: 2019 ACR/ARP Annual Meeting; November 8-13, 2019; Atlanta, GA. https://acrabstracts.org/abstract/a-national-needs-assessment-of-males-with-sle-assessing-medical-psychosocial-support-coping-needs/. Accessed January 31, 2020.