The researchers found that SLE is among the top 20 leading causes of death in females aged 5 to 64 years. The deaths of 28,411 girls and women were recorded with SLE as the underlying or a contributing cause of death between 2000 and 2015. The largest number of SLE deaths was among women aged 65 years and older (10,238). In women aged 15–24 years, SLE was the top cause of death among chronic inflammatory diseases, more so than diabetes mellitus, HIV, chronic lower respiratory disease, nephritis, pneumonitis and liver disease.
Although SLE was shown to be among the leading causes of death in young girls and women, it may actually rank higher. Previous research showed SLE may not be recorded on the death certificate for as many as 40% of patients with SLE in the U.S. This under-reporting may be a result of patients with SLE dying prematurely of complications, including cardiovascular events, infections, renal failure and respiratory diseases.
Additionally, at the time of death, many SLE patients may be under the care of physicians who may have a limited awareness of SLE as the underlying cause of death. For example, one Swedish study showed 86% of 2,314 SLE deaths in Sweden occurred in hospital units other than rheumatology.
Implications & Recommendations
The researchers conclude their findings underscore the importance of SLE as an important public health issue among young females. They advocate for increases in research funding for SLE and state that SLE should be included in the CDC’s selected list of causes of death for its annual ranking. They also have several recommendations for how rheumatologists can help increase awareness, and what patients can do to advocate for themselves.
Drs. Yen and Singh recommend public campaigns to increase awareness among pediatricians and primary care physicians and improve early diagnosis and better management of SLE. To help educate their colleagues in other specialties, rheumatologists can do several things. “First, rheumatologists at academic centers are fortunate to have the opportunity to teach medical students and residents about lupus,” Dr. Yen says.
“Second, rheumatologists can take a more proactive role in educating primary [care] physicians in their community at various venues, including lectures and case presentations at local medical organizations,” Dr. Singh says. He also suggests rheumatology funding agencies assist medical students and residents to allow them to spend time in rheumatology clinics, citing for example the Rheumatology Research Foundation, which offers preceptorships to medical students and residents.
