GOAL Scientific Learning

Without a new medication approved for systemic lupus erythematosus (SLE) by the Food and Drug Administration in more than 40 years, there has been a recent flurry of research activity and clinical trials. However, a basic epidemiologic understanding of SLE, which is necessary to understand the full clinical spectrum and population burden, lags behind. Estimates of the incidence and prevalence of SLE in the US have varied widely and are outdated (Table 1). This is likely due to the use of different case definitions, limited sources for case ascertainment, small source populations, and other demographic groups targeted, as well as the protean characteristics of the disease, poor reliability of self-report, lack of reliability in diagnosis and coding in health system databases, and issues related to access to health care by high-risk populations. Estimates for other types of lupus (e.g., primary discoid lupus) are even less well-defined.

A recent study, using data provided by our GOAL participants, highlighted the burden of SLE on employment. Our findings indicate that SLE imposes a substantial burden on individuals and society. Major factors that negatively impact work outcomes are fatigue, disease activity, and organ damage. More effective treatments, along with coping strategies at the workplace, are needed to reduce the burden of SLE on work outcomes.

The primary care system has key functions in delivering core medical and preventive care and helping patients to coordinate and integrate care across health care providers. Primary care services have been shown to improve health outcomes and reduce costs. However, Americans receive only half of the recommended primary care services, and those who receive poorer quality primary care have higher mortality than those who receive higher standards of care. Thus, adequate delivery of primary care is becoming a greater priority for U.S. policy makers.

Historically, many public health efforts have focused primarily on individual behaviors. Social determinants of health (SDH) are conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. Including social determinants in the health disparities framework provides a more comprehensive understanding of the reasons why low-income communities and communities of color experience disproportionately higher rates of disease, healthcare utilization, and death. These conditions shape people’s options, choices, and behavior, which can then, in turn, impact outcomes. Studies of social determinants have been relatively lacking. They are imperative in lupus, where the disease disproportionately impacts minority communities, and biological factors cannot fully explain or address health disparities.

Qualitative studies among CLE patients revealed critical unmet needs related to CLE treatment and care, including insufficient patient education to better cope with the disease and lack of treatments to improve damaged skin. Furthermore, Black patients tend to report low satisfaction with dermatologists’ knowledge of their skin and hair, as well as a lack of culturally sensitive interaction style. Since Black
people are more susceptible to DLE than White people and are more likely to develop lesions on the scalp with more severe damage and dyspigmentation, a knowledgeable and culturally competent approach is necessary to serve these patients better. Cosmetic care is another unmet need perceived by patients. Cosmetic procedures are avoided mainly by practitioners because of the potential side effects that may occur in autoimmune and photosensitive conditions. Moreover, these procedures are expensive, and patients with CCLE are often left with permanent
skin damage.