Helping Patients with SLE Thrive

EULAR 2024 (VIENNA)—In the 18th Century, Queen Anne of England was one of the most famous people with what we now understand to be systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS). All but one of her 17 pregnancies ended in miscarriage, stillbirth or infant death before she died at age 49.¹

More than three centuries later, the EULAR 2024 session Systemic Lupus Erythematosus in 2024: What Is on the Horizon? offered fresh insights into the most cutting-edge research on SLE. The lecture was presented by Laurent Arnaud, MD, PhD, full professor of rheumatology at the Department of Rheumatology, University Hospitals of Strasbourg and French National Reference Center for Rare Autoimmune Diseases, France.

SLE Trends

Dr. Arnaud began by discussing the global prevalence of disease, which is estimated to be about 44 cases per 100,000 patient-years—meaning approximately 3.4 million people worldwide have SLE.²

Thankfully, SLE’s survival rate has increased, with a five-year survival rate of 53% in 1955 increasing to a 10-year survival rate of greater than 90% in 2020. However, the standardized mortality ratio for adult-onset SLE remains high, at 2.2, compared with the general population. This ratio is higher in patients with juvenile-onset SLE at 7.2.³ These ratios mean that patients who develop SLE as an adult (i.e., after age 16) have a death rate more than two times that of the general population. This rate is more than seven times that of the general population in people who developed SLE younger than 16 years old.

Diagnostic delay remains a persistent problem for patients with SLE, noted Dr. Arnaud, resulting in damage from untreated disease and from exposure to such treatments as corticosteroids.

More must be done to decrease diagnostic delay and improve the prognosis for patients with SLE, said Dr. Arnaud. Many disruption points exist in the standard pathway from symptom evaluation to diagnosis, such as undertraining of physicians on SLE, lack of adequate referral strategies for patients with positive anti-nuclear antibody (ANA) results and a dearth of access to SLE care coordinators, such as specialized nurses.

Improving Prognosis

Dr. Arnaud said patient prognosis may benefit from an enhanced and evolving understanding of genetics. Through genome-wide association studies (GWAS), more than 100 genetic loci have been associated with SLE.

In 2020, Reid et al. genotyped patients with SLE (1,001 in a discovery cohort and 5,524 in a replication cohort) and healthy controls (2,802 in a discovery cohort and 9,859 in a replication cohort) using a 200K Immunochip single nucleotide polymorphism array. A genetic risk score was calculated for each patient using 57 SLE risk loci. The study found that a high score was associated with early onset SLE, increased organ damage, cardiovascular disease, end-stage renal disease and decreased survival.⁴