Two aspects of the clinical and humanistic burden of systemic lupus erythematosus: Mortality risk and quality of life early in the course of disease

Objective. To evaluate mortality risk and predictors among recently diagnosed systemic lupus erythematosus (SLE) patients. Methods. The vital status of 265 SLE patients and 355 controls enrolled in the Carolina Lupus Study (median time since diagnosis 13 months) was determined ∼5 years after enrollment. We also assessed the utility of an 8-item quality of life instrument, derived from the standard 36-item Medical Outcomes Study Short Form 36, as an additional measure of disease impact. Results. Five years after diagnosis, 9.7% of patients compared with 0.3% of controls had died (P < 0.0001). Increased mortality risk was seen among older patients (adjusted hazard ratio [HR] 1.03, 95% confidence interval [95% CI] 1.01-1.06 per 1-year increment in age) and among men, African Americans, patients with lupus nephritis, and patients with anti-double-stranded DNA antibodies (adjusted HR ∼2.0 for each of these factors). In addition, patients who did not provide a blood sample at study enrollment experienced increased mortality risk (age-, sex-, and race-adjusted HR 3.7, 95% CI 1.5-9.1). Similar results were seen in analyses limited to time from study enrollment. Physical component scores of the quality of life measure were 7.7 points lower (P < 0.0001) and mental component scores were 1.8 points lower (P = 0.07) in patients compared with controls. Conclusion. The mortality risk among SLE patients is significant, particularly among African Americans, even early in the disease process and even with currently available treatments. Differences between cases and controls in health-related quality of life using the Short Form 8 also demonstrate the multidimensional burden of SLE.