‘Access should not be based on skin color’: The need for race-agnostic GCA care
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Dismantling the popular misconception that giant cell arteritis only occurs in white individuals is critical to providing timely diagnosis and care to all patients who may have the disease, regardless of race or ethnicity.
In a recent letter published in The Lancet Rheumatology, Tiara Gill, MD, a consultant rheumatologist at London North West University Hospitals NHS Trust, and colleagues, challenged the myth that GCA does not occur in people of color. They aimed to understand and describe the myriad reasons for this fallacy and supported their argument with a comprehensive literature review. The results disproved the myth.
“We need to address these misconceptions because these ideas may have led to inequitable care,” Sarah L. Mackie, MD, associate professor in vascular rheumatology at the University of Leeds, honorary consultant rheumatologist at Leeds Teaching Hospital NHS Trust and coauthor of the paper, told Healio.
According to Mackie, this work remains critically important as it directly relates to the experiences and care of many patients with GCA.
“Because of the importance of pre-test probability in diagnosis, even with modern imaging tests, such myths can have severe consequences for people of color,” she and colleagues wrote.
This is not an abstract claim, according to the paper’s corresponding author, Puja Mehta, MD, rheumatologist and clinical research fellow in respiratory medicine at University College London.
“Anecdotally, all of us have seen biopsy-proven GCA in people of color,” she said in an interview. “Our motivation was to review the literature and then communicate to the wider rheumatology community that a nuanced approach and understanding of the epidemiology of GCA is needed.”
A closer look at the specifics of the report may reveal wider disparities not just in rheumatology, but in health care overall.
‘Problematic’ reporting
The literature review performed by Gill and colleagues included all papers with findings on ethnicity and GCA.
“We found many international cohorts of patients where GCA has been diagnosed based on histological findings, and not just on clinical features,” Gill told Healio. “Data sets from North America, India and the United Kingdom were included.”
However, the researchers were interested in questions larger than the relatively small population of patients with GCA worldwide, such as the use of ethnicity as a classification. This, according to Mehta, has historically been “problematic” due to varied reporting.
“It is difficult to establish even on self-reported categories,” she said. “Even the white category is heterogeneous.”
This heterogeneity exists because the way race and ethnicity are categorized may vary depending on the region.
“There is not one universal way we classify ethnicity,” Gill said. “The definitions for different ethnic groups can vary from country to country.”
For these reasons, Gill and colleagues stated it would be incorrect to conclude that GCA occurs in just one ethnic group.
Importantly, this incorrect conclusion can have real-world consequences. Meaning, if the prevailing wisdom is that GCA only occurs in white individuals, this could impact the way resources are delivered and the capacity for patients from underrepresented groups to access care if or when they need it.
“Health care should be universal, treatment should be universal,” Mehta said. “Access should not be based on skin color.”
Research impacted by ‘bias, geography and affluence’
“There have been many conversations within the wider medical literature about inclusivity in research and health care, particularly about health inequalities,” Mackie said.
According to Mackie, this conversation has occurred both at the broader societal level and at the level of other diseases and conditions. For example, multiple sclerosis has also historically been considered a “white person’s disease” but is now recognized as a condition that can potentially impact people of any ethnicity.
“There are many national and international initiatives to address these biases,” Mackie said. “With that in mind, I would not say we are saying something new here. What we were hoping to do was contribute to this conversation and point out the relevance to current debates in this area.”
Based on the experience of publishing this paper, Mackie offered some action points to consider for both the rheumatology and wider medical communities.
“Firstly, GCA is a rare disease,” she said. “Patients with GCA need education and support that is inclusive of people of any ethnicity.”
The second point is that GCA diagnosis is notoriously difficult.
“Access to care, including tests and treatments, should be based on symptoms, signs and laboratory markers, and not based on skin color,” Mackie said.
The final action point offered by Mackie pertains to research.
“We will need to design our future GCA research studies and clinical trials to be inclusive of, and accessible to, all patients who may be potentially eligible,” she said.
Inclusion in epidemiological research is affected by “ascertainment bias, geography and affluence,” Mehta added.
“Minority ethnic participation and recruitment are suboptimal,” she said. “To overcome this, it is imperative to be intentional and examine and dismantle structural, language, and cultural barriers and address historical mistrust. Discussions are needed.”
There is evidence that this is already happening, for example, in the form of a conversation among the journal correspondence pages following the publication of their Lancet Rheumatology paper.
‘Break their biases’
Mehta explained the details and implications of the correspondence that occurred in the wake of their publication.
“We cited a study that had shown parity between Black and white patients in terms of GCA incidence,” she said.
A group of U.K. researchers responded, critiquing the methods and findings of the study that had been cited.
“As it happened, the authors of the original study published a reanalysis of their data that robustly confirmed the original findings,” Mehta said. “In short, the concerns about that study were abrogated. It was useful to have that discussion at that time.”
The researchers understand that GCA is a disease that impacts relatively few patients worldwide. The reach of an exchange on the topic in the medical literature, accordingly, may not extend so far.
“Ongoing education is very important to raise awareness not just about GCA but about these kinds of disparities in medicine overall,” Mehta said.
She additionally stressed that although GCA can be notoriously difficult to diagnose and manage, the message from the group is comparatively simple.
“Clinicians who are managing a patient with suspected GCA should weigh the signs, symptoms and lab markers, and not skin color, when making their diagnosis,” Mehta said.
Looking ahead, Mehta urged rheumatologists and other providers to follow a “race-agnostic” diagnostic and treatment paradigm.
“We hope to join a larger zeitgeist of research groups and individuals looking at disparities in health care,” she said. “We hope that our letter and this exchange regarding GCA will encourage other rheumatologists to look at their particular area of focus with a different lens and break their biases with the hope of normalizing race-agnostic diagnostic and treatment algorithms.”
Reference:
Gill T, et al. Lancet Rheumatol. 2023;doi:10.1016/S2665-9913(23)00068-1.
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