Sexual orientation, gender identity and expression in arthritis research

Arthritis can impact anyone at any age. However, some communities experience higher rates of arthritis and may experience greater barriers to adequate care than others. According to the Key Health Inequalities in Canada report (2018), lesbian women between the ages of 18-59 are 1.5 times more likely to have arthritis than heterosexual women (16.5% compared to 10.9%), while bisexual adults are 1.4 times more likely to have arthritis than their heterosexual counterparts (13.3% compared to 9.2%). The reasons for this are unclear and further research remains to be done. As the report states, “The disproportionate burden of arthritis of certain groups is driven by a complex system of social and structural drivers of health that remain to be fully explored and understood.”

In addition to an increased incidence of arthritis for some groups, a person may also experience barriers within the healthcare system due to discrimination based on sexual orientation, gender identity, and/or gender expression (SOGIE). These barriers can include a lack of research and knowledge about how to best meet the healthcare needs of 2SLGBTQIA+ individuals as well as other structural barriers. Dr. Alan Zhou, MD, Internal Medicine Resident Physician at the University of Ottawa and incoming Rheumatology Resident Physician at the University of Toronto, and Dr. Richard Henry, PhD, Postdoctoral Fellow in the Faculty of Medicine at McGill University and Lady Davis Institute of Medical Research at the Jewish General Hospital and Fellow on the Canadian Task Force on Preventive Health Care (CTFPHC) are two researchers currently working to get a better understanding of how SOGIE impacts patients with arthritis and rheumatic diseases.

The Arthritis Society recently spoke to Dr. Zhou and Dr. Henry to learn more about their research.

Can you each tell us a bit about the research you have been doing on sexual orientation, gender identity and gender expression as they relate to arthritis?

Dr. Henry: One of my current projects is focused on examining existing primary healthcare guidelines to determine how inclusive they are for 2SLGBTQIA+ individuals. We have primarily focused on Canadian guidelines but are looking to expand to international guidelines. This work has important implications for the development of more inclusive guidelines, including those related to arthritis and other rheumatic diseases.

Dr. Zhou: I am working on a scoping review to map existing research studies of 2SLGBTQIA+ patients who suffer from rheumatic diseases. Our goals are to summarize the clinical outcomes of these patients, to explore the health inequities that they face, and to identify any existing or proposed solutions to mitigate these inequities. There is a lack of research about rheumatic disease in 2SLGBTQIA+ patients. Our work will summarize what we currently know, in order to highlight avenues for future research.

Why is research on sexual orientation, gender identity, and gender expression important within the field of arthritis research?

Dr. Henry: 2SLGBTQIA+ individuals have specific health care needs that are not typically addressed in guidelines. For example, patients with lupus are at higher risk of cervical cancer. A trans man with lupus who has a cervix therefore needs to undergo routine cervical cancer screening. Understanding how SOGIE can impact specific healthcare needs will help inform more inclusive guideline creation and lead to better care.

Dr. Zhou: One reason for why health inequities exist for 2SLGBTQIA+ patients is that many healthcare providers lack the specific set of cultural competencies required to care for them. Culturally competent healthcare providers are especially important for patients with arthritis and other rheumatic diseases, because the chronic nature of these conditions requires a great deal of collaboration between the patient and the provider. Research on arthritis and rheumatic diseases in 2SLGBTQIA+ patients is therefore particularly important for raising awareness among healthcare providers.

What gaps currently exist?

Dr. Henry: Only 17% of the primary healthcare guidelines we identified in our study addressed 2SLGBTQIA+ patients, and even fewer included specific recommendations. For example, breast cancer screening guidelines typically refer to cisgender women, and do not address trans men who are similarly at risk of developing breast cancer if they have not had gender-affirming surgery. As a result, trans men are less likely to be screened for breast cancer than cisgender women. Overall, the lack of 2SLGBTQIA+ representation in clinical guidelines has translated into a limited understanding among healthcare providers of the specific healthcare needs of 2SLGBTQIA+ patients, which in turn has resulted in care gaps for 2SLGBTQIA+ patients.

How might your research contribute to improved arthritis care for 2SLGBTQIA+ communities in the future?

Dr. Zhou: Dr. Henry’s work has highlighted the lack of representation of 2SLGBTQIA+ individuals in primary healthcare clinical guidelines. Our scoping review aims to address this gap in the context of arthritis and rheumatic disease. This work is part of a larger project on Diversity and Inclusion in Rheumatoid Arthritis spearheaded by Dr. Cheryl Barnabe, an Adult Rheumatologist in Calgary and Canada Research Chair in Rheumatoid Arthritis (RA) and Autoimmune Diseases. Dr. Barnabe has previously published on the first-hand experiences of select priority populations that face inequities in RA care (Pianarosa et al., 2021), and is currently expanding this work to focus on the first-hand experiences of 2SLGBTQIA+ patients who have RA.

What are your hopes for the future of arthritis research for 2SLGBTQIA+ communities?

Dr. Henry: The hope is that by understanding the unique barriers that 2SLGBTQIA+ patients face in accessing healthcare, we will be better equipped to produce high-quality clinical guidelines that are relevant to 2SLGBTQIA+ patients. This will ultimately help healthcare providers provide better quality care to these patients.

Dr. Zhou: In addition to future clinical guidelines that are more representative of 2SLGBTQIA+ patients, we plan to use the knowledge gained from our research to produce educational materials for arthritis care providers in Canada.