Understanding the Epidemiology and Progression of Systemic Lupus Erythematosus

Abstract

Objectives-This review examines the burden and patterns of disease in systemic lupus erythematosus (SLE) and the influence and interactions of gender, ethnicity, age, and psychosocial attributes with respect to disease progression, focusing on issues relevant to clinical practice and research. Methods-PubMed literature search complemented by review of bibliographies listed in identified articles.Results-An increased risk among reproductive age women is clearly seen in African Americans in the United States. However, in other populations, a different pattern is generally seen, with the highest age-specific incidence rates occurring in women after age 40 years. The disease is 2 to 4 times more frequent, and more severe, among nonwhite populations around the world and tends to be more severe in men and in pediatric and late-onset lupus. SLE patients now experience a higher than 90% survival rate at 5 years. The less favorable survival experience of ethnic minorities is possibly related to socioeconomic status rather than to ethnicity per se, and adequate social support has been shown to be a protective factor, in general, in SLE patients. Discordance between physician and patient ratings of disease activity may affect quality of care.Conclusions-Our understanding of ways to improve outcomes in SLE patients could benefit from patient-oriented research focusing on many dimensions of disease burden. Promising research initiatives include the inclusion of community-based patients in longitudinal studies, use of selfassessment tools for rating disease damage and activity, and a focus on self-perceived disease activity and treatment compliance. Ethnicity, a broader construct than is implied by the term "race," encompasses genetic, geographic, cultural, social, and other characteristics shared within a population (2-4). Not surprisingly, the phenotypic expression of lupus varies between individuals of different ethnic groups. A growing body of research has sought to characterize the influence of socioeconomic (5) factors and ethnicity on the incidence, activity, and progression of the disease. Less attention has been paid to the influence of psychosocial factors on disease progression (Fig. 1). In this article, we review relevant research findings pertaining to these dimensions of SLE, focusing on studies conducted in the past 30 years. We also highlight current data gaps and discuss recommendations for future research. Keywords MethodsThis review is based on publications found through searches of the MEDLINE database for relevant articles using the combination search terms of lupus and (epidemiology, incidence, prevalence, mortality, gender, ethnicity, damage, quality of life). References within these selected reports were also reviewed. We included epidemiological studies of incidence or prevalence that spanned the years 1975 to 2000, and mortality studies of cohorts assembled in 1975 or later. The mortality studies were limited to inception or near-inception cohorts (that is, cohorts of patients who entered the...

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