Lupus Epidemiology and Risk Factors

Fotios Koumpouras, MD, FACR: Studies have shown there’s been a significant delay to diagnosis. What’s the average time to diagnosis in lupus? Five years at least in the United States.

Ronald van Vollenhoven, Prof. PhD: It’s years, right?

Fotios Koumpouras, MD, FACR: Right, 5 years or so. I think Murray Urowitz, MD, FACP, FRCPC, and his Canadian cohort demonstrated that in those 5 years as patients had come into an academic cohort, that they had, unfortunately, accrued damage, using another index called the SLICC [Systemic Lupus Erythematosus International Collaborating Clinics] Damage Index. These folks who are not yet diagnosed are actually accruing damage from inflammation. This is, of course, the goal in therapy, to recognize the disease and try to control it if we can.

Ronald van Vollenhoven, Prof. PhD: Yes.

Fotios Koumpouras, MD, FACR: In the United States, and probably now of course in Amsterdam, it’s very multiracial and multiethnic, and we realize that certain groups might be at increased risk for SLE [systemic lupus erythematosus]. I think if there’s a general rheumatologist and individuals are treating lupus, it’s very important—and I want to make this point for our group—that certain groups are definitely at risk for organ lupus, particularly nephritis. I think individuals of Hispanic origin or African American descent and Southeast Asian descent, these individuals have an increased risk of lupus nephritis. That tends to occur in the first 5 years where there is this searching for diagnosis, and that’s usually in the primary care physician’s hands. For our rheumatologists, they should being aware that particularly nephritis is occurring at a higher frequency in certain ethnic groups, and to be astute to follow abnormalities.

Ronald van Vollenhoven, Prof. PhD: That’s absolutely right. Of course, that differs from country to country. In Amsterdam, we have quite a lot of African Caribbean origin population and also from Africa in more recent immigrations. It’s striking that the disease may be more prevalent, we don’t actually know. But when it’s there, it seems it’s more severe. We do see the really dangerous manifestations of lupus a bit more in certain ethnic groups, and indeed, as you mentioned lupus nephritis, also seems to be overrepresented. But of course, it’s at the population level. I think at the individual level, we don’t use that so much, and we still try to also collect some data to make those comparisons. I think treatment wise, you’re guided by the symptoms and the manifestations, and the person’s background is another aspect.

Transcript Edited for Clarity