‘Low confidence’: Fixing the education gap for assessing lupus lesions in Black patients
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Black patients have a three- to five-fold increased incidence of primary chronic cutaneous lupus vs. white patients, but are often completely missing from training materials and most images of cutaneous lupus rashes online.
This lack of proper representation can result in material, adverse consequences for many patients. For example, a paper published in Arthritis Care & Research by Tinianow and colleagues reported that many rheumatologists report “low confidence” in assessing cutaneous lupus erythematosus (CLE) lesions, particularly those in patients who identify as Black, Indigenous or people of color. These patients are “historically excluded from educational materials,” they wrote.
To address this lack of confidence, the group created an interactive online module to teach medical trainees and experienced providers alike how to identify lesions and rashes on light, medium and dark skin tones.
The module included 102 images, the majority of which were culled from the personal archives of study authors. The surveyed population included 132 dermatologists, rheumatologists and internists in the greater St. Louis, Missouri, metro area who completed the pre-module evaluation survey. Later, 94 of these participants completed the post-module evaluation survey.
“We asked them how confident they were at looking at any rash, any lupus rash, any lupus rash in light skin tones and any lupus rash in skin of color,” study co-author Lisa Zickuhr, MD, MHPE, assistant professor of medicine in the divisions of general medicine and rheumatology, and associate director of the Rheumatology Fellowship Training Program, at the Washington University in St. Louis School of Medicine, told Healio.
“Their confidence decreased with each of those categories, with the lowest confidence ratings identifying lupus rashes in patients of color,” she added. “But these are the patients who need confident health care providers the most, because patients of color are most susceptible to lupus and its long-term complications. It was an intersection of the most impacted patient population and the least confidence among providers. The result is that so many patients go undiagnosed or experience a delay of diagnosis, because the rashes are many times clues to make a diagnosis of systemic lupus.”
However, following the training module, there was a significant improvement in the ability to identify subacute CLE among the participants, according to the researchers. Those surveyed before and after the module also demonstrated an improved ability to describe how to photograph rashes. Moreover, confidence across all domains of the training module was observed among participants.
The researchers concluded that this module is the first of its kind to demonstrate the capacity to increase knowledge among providers surrounding cutaneous lupus in patients with medium and dark skin tones.
Healio sat down with Zickuhr to discuss the unmet need for identifying lesions in patients with darker skin times, the utility of training modules to improve provider knowledge, and the future of CLE care for this patient population.
Healio: Why did you and your team decide to put together this training module?
Zickuhr: This project actually started many years ago when I was still a fellow. I had a patient who identified as Black with very complicated lupus. I have to give a shoutout to Adam Brown’s Rheuminations podcast, because her case is the basis of his episode, “TMI on TMA.”
The patient had a rash that I could not identify. When I went to Google Images to try to find an image that matched it, all the images were of people with fair skin. I wondered, “How is this possible?” Black patients often have the most pronounced lupus, including cutaneous manifestations, but all of the images represented white patients. In fact, that issue is still continuing.
I decided to partner with dermatology and other educators at Washington University. We surveyed Google Images and rheumatology textbooks, specifically looking for clinical images of lupus to confirm that, indeed, people of color are underrepresented in these materials.
Healio: How does this lack of representation in education materials impact clinical practice?
Zickuhr: When I started my career as a rheumatologist, I felt like was unprepared to diagnose or assess rashes in patients with skin of color. There was this gap in my education. Often, I had to bring patients back multiple times to identify their rash because they were completely different from the rashes I had been trained to see in lighter skin tones.
Healio: Were you the only group looking into this issue?
Zickuhr: No. Around the same time, a group led by Sarah Goglin, MD, at the University of California, San Francisco, published a similar study. They looked at commonly referenced rheumatology education materials and had similar results as ours. This started a wonderful collaboration between Washington University and UCSF.
Healio: How did it evolve after that?
Zickuhr: Well, we asked ourselves how we can overcome this challenge. We partnered with Joe Monroe, PA, MPAS, in the division of dermatology at the Tulsa, Oklahoma, Veterans Affairs clinic. Together, we were able to pool images from patients we had treated to create this module. Patients gave consent for their images to be used. One of our guiding principles was to be sensitive to racism in the medical system. There is significant medical mistrust, particularly among patients who identify as Black, and we wanted to be transparent with people about where and how their images would be used for education.
As the collaboration evolved, we realized it was noteworthy because we all practice in our own geographic regions, and we all have our own microcosm of patients. This led to creating a comprehensive collection of images. For example, in St. Louis, we have a large Black population. In San Francisco, there are more Asian and Hispanic patients. In Oklahoma, there is a significant Native American population. In this way, we were able to create a module with a broad spectrum of skin tones.
Healio: What is involved in the training module itself?
Zickuhr: The module launched in 2022 and is available to anyone. It can be accessed through a link in the paper published in Arthritis Care & Research, or on the Washington University Division of Rheumatology website. It takes about 45 minutes to complete, and we have been told that it is easy to integrate into a curriculum.
You can do it in a formal educational setting or on your own time. You can also learn how to take high-quality images of different skin tones to improve documentation and communication either with fellow providers or for the electronic health record. This may lead to better images available for teaching purposes.
Healio: What has been the response to the training?
Zickuhr: The module has been studied among internal medicine residents and rheumatology fellows. However, anyone who identifies that this is a gap in their knowledge can benefit from the module. It is meant to be introductory and teaches how histopathology influences the ways cutaneous lupus can have different appearances in different skin tones. For example, rashes are often red on lighter skin tones but more violaceous on darker skin tones.
The module also teaches an approach to help differentiate between acute, subacute and chronic cutaneous lupus or other rashes that mimic lupus rashes. We want to make sure that internists as much as rheumatologists are attuned to these nuances. With this knowledge, you start to realize which mimicking rashes can be treated in primary care and when you have to sound the alarm bell and bring in a dermatologist or a rheumatologist to treat cutaneous lupus.
Healio: Are you starting to see a broader impact of your study and the module?
Zickuhr: What has been remarkable about it is that we have seen several specialties take up the torch to correct their own educational materials. Of course, we have seen the effects in dermatology and rheumatology, but there is also an impact in publishing companies. The New England Journal of Medicine and the American College of Rheumatology’s image library both issued calls for images of rashes in skin of color.
This is a multifaceted issue. There is not necessarily one person or group who has the responsibility for leading this effort. Each of us has to take responsibility for our own piece of the puzzle and correct that component.
Healio: What are the next steps?
Zickuhr: The next step has been a conversation about creating another training module focused on other autoimmune rashes like eczema, psoriasis or sarcoidosis in patients with skin of color. We — Washington University and UCSF — also recently did a repeat analysis of the original UCSF methodology. This was conducted 2 years after Dr. Goglin’s research group concluded their initial analysis. We measured how representation is changing in clinical images published in medical education materials.
Healio: What is the real-world result of all of these efforts?
Zickuhr: We have seen a remarkable improvement in the representation of images available in the New England Journal of Medicine, Kelley’s Textbook of Rheumatology and the ACR image library. It really shows that if shareholders acknowledge the problem of under-representation, formulate a plan of action and take steps to correct it, you can see impact on the other side.
Reference:
Tinianow A, et al. Arth Care & Res. 2023;doi:10.1002/acr.25201.
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