Dr. Lim discusses the challenges of diagnosing and treating lupus, the tools and resources offered by the Lupus Initiative, and the impact of unconscious bias on care.
Sam Lim, MD, MPH, is consortium chair of The Lupus Initiative and associate professor of medicine and epidemiology, Division of Rheumatology, Emory University School of Medicine. Here, he talks about why it’s important for physicians to learn more about lupus and discusses some of the resources offered by the Lupus Initiative.
The Lupus Initiative is an effort that was started by the Office on Women’s Health, the Office of Minority Health, and the Office of the Surgeon General, with the goal of reducing the disparities that we have seen in lupus by primarily focusing on the education of clinicians, specifically those who are not rheumatologists. These are the people who are on the front line of seeing cases. Since it’s well known that patients with lupus can go for many years without being diagnosed, this is an opportunity to close that gap. The effort is funded through those organizations, and managed by the American College of Rheumatology.
The first step in launching the Lupus Initiative was to get the specialists to come to the table and help us create the materials. What’s really neat is that this consortium of experts, which is made up of at least 50 people who are all extremely busy, was so generous with their time and expertise when it came to creating the curriculum. With their assistance, we’ve put together a collection of resources that is ready to be used by any organization that wants to teach it. For example, for medical educators in university settings, there is a PowerPoint slide and lecture series. It features slides that have been vetted by specialists and people who are tops in their fields. It’s really well done and packaged together to make it easy to use. Of course, people can pick and choose whatever parts of it they want, but it’s also designed to be plug-and-play.
We also provide a series of case studies, which are very important because they use real-world situations to help put this knowledge into context. We have four traditional case studies that describe the evolution of the patient’s condition and include a manual that facilitators can use to guide the discussion. They also include all the appropriate background information, documentation, and references. We also developed with one of our academic partners an online interactive case that utilizes the latest in technology to make the cases really come to life in a virtual setting. It uses an interface that is similar to the electronic medical records that everybody is used to now. It really walks people through a typical case, how they would see it in the hospital or emergency room, using high-quality graphics and videos. But what really challenges people is the fact that you can take the case in a variety of different directions depending on the decisions you make. And you get immediate feedback as to the implications of those choices.
Physicians can also access a library of reference videos featuring patients talking about lupus, experts addressing various aspects of health disparities in lupus, and patients talking about some of the skills and attributes they wish their providers possessed.
We also offer to medical providers a variety of materials they can use with their patients. These are materials that practicing physicians can use to help facilitate interaction with their patients and improve care. The Lupus Initiative also offers a variety of patient education resources, including pamphlets, symptom trackers, videos, and a mobile application.
Finally, practicing physicians can access a series of continuing medical education lectures that cover some of the most important issues in lupus relating to women’s health, cardiovascular disease, disparities in care, and even novel topics like unconscious bias, which is an evolving issue that I think physicians need to understand better.
All of these resources are available for free at the Lupus Initiative website.
You mentioned the Lupus Initiative is directed at primary care physicians who are on the front line of treating patients with lupus. Can you describe the role that they play and why it’s important for them to get this extra level of education?
What makes a systemic autoimmune disease like lupus so challenging to assess and treat is that because the immune system is everywhereâ€‘â€‘top to bottom, outside, insideâ€‘â€‘you are presented with such amazing diversity of symptoms, and these symptoms overlap or they’re very nonspecific with other conditions. So the initial manifestations of lupus can look like so many different things, including a common cold, flu, or allergic reaction. That is why it’s expected that people would go first to their primary care physician and they would be evaluated for these common conditions. But it’s also exactly for that reason why people can bounce back and forth from different doctors for several years before they get diagnosed with lupus.
That’s why it’s so important for primary care physicians to be aware of the disease, to have it in their differential, to think about it because that’s really the first step in all of this. Once it’s on their radar, we hope that they will learn some key treatment decisions to therefore maximize the best outcome for these patients.
Do the Lupus Initiative educational programs focus on the role of the primary care doctor in treatment once the diagnosis is made?
Yes. The curriculum discusses important treatment-related issues for which primary care physicians will be primarily responsible. For example, there is a high rate of cardiovascular disease in lupusâ€‘â€‘that’s a point that is made time and time again in the curriculum. What really accelerates mortality for people with lupus who survive after the first few years (which is most of them), is accelerated cardiovascular disease. And that is an issue that’s going to be best dealt with as a team, but primarily headed up by the primary care physician. It really comes down to the basics of cardiovascular disease prophylaxis: cholesterol, metabolic syndrome control, controlling smoking, diabetes, etc. These are very common comorbidities in lupus and often the rheumatologists are so busy on the primary issue of the immune system problems, that the secondary issues that really loom the largest long-term can get overlooked. That’s why it’s important for the primary care partners to be on board.
What impact does undiagnosed or under-treated lupus have on patients’ quality of life?
Some of the more common symptoms of lupus, whether it’s diagnosed or undiagnosed, include significant fatigue, joint pain, and those types of issues. Although lupus can affect almost anyone of any age of any gender, the primary demographic that is affected is young women of childbearing age in their 20s to 40s, and particularly women of color. You’re talking about a very special group of patients that are in the prime of their life in terms of careers, job opportunities, and family.
In this country, access to healthcare and health insurance is heavily based upon employment status. So you can see how lupus, which is associated with profound fatigue and pain, can have a serious impact on patients’ ability to work and keep a job. If you lose your job or you’re under employed, and therefore underinsured, it can severely limit access to treatment.
The symptoms of lupus can make a profound impact on employment and insurability, which ties in with equally important issues of quality of life, self-management, and self-efficacy. If you combine them all together it can have devastating impacts on people despite what appears to be on the surface relatively benign symptoms of chronic pain and fatigue. It really does build up in this vulnerable population to be something very profound.
How can conscious and unconscious bias affect treatment? Given the patient population that lupus predominantly strikes, how important is the idea of culturally competent care and what are some of the tools offered by the Lupus Initiative to help physicians practice more culturally competent care?
The whole concept of cultural competency and unconscious bias is very important because I think no clinician would readily admit, or want to admit, or dare to admit that they have an active bias or they’re not culturally sensitive and inclusive. The point of the curriculum is not to point that out; we’re not trying to say that all physicians are biased. We’re really trying to point out the unconscious aspects of it.
Unconscious bias is a common part of everyday life. It is another term for the filter or lens through which we view the world, and everybody has experiences that shape who they are, and that’s not anything to back down from. But what we all need to understand is that even under the most well meaning of circumstances and upbringing, there can be opportunities or possibilities that the lens through which we look may impact how we interact with our patients. And, therefore, it may limit the effectiveness that we have in terms of their outcomes. The topics of cultural sensitivity and bias have become more ingrained in the medical education of younger doctors, but physicians who have been practicing for a while haven’t really been exposed all that much to them, certainly not on a consistent continuing basis in terms of ongoing medical education. Given that lupus disproportionately affects young, female, ethnic minority patients, the Lupus Initiative curriculum is wonderful vehicle in which to bring up these issues in order to help us all treat patients across all chronic conditions better.
Is this an ongoing program? Are there opportunities for interested physicians to still get involved in the Lupus Initiative?
The initiative is complete in terms of developing its curriculum, but the initiative is more than just the curriculum. It really is an ongoing community that values this wealth of medical knowledge and the concepts that we’ve been talking about: better chronic disease care, health disparities, cultural competency, and the evaluation of bias. There aren’t currently any specific opportunities for additional involvement, but the initiative is still developing ways to sustain these efforts. I would say the specifics are not there yet, but the concepts are certainly there that indicate that we’re committed to keeping these initiatives alive and ongoing. And there will certainly be opportunities down to the road to continue to improve on the materials we offer, as well as to sustain the types of topics that we’ve been presenting. So I would ask your audience to just stay tuned on that.