Socioeconomic aspects of SLE

Gender as a construct in risk and morbidity

The epidemiology of SLE is characterized by its predilection for women of childbearing age. The prevalence ratio between females and males is often 9–15:1, according to most population estimates. Males are also often cited to have more severe organ damage and higher morbidity and mortality compared to females with SLE. Most of the literature has focused on the causal underpinnings of the differences in risk for males and females, often attributing these differences to the biology of sex including sex hormones and chromosomes, as well as intrauterine selection. The attention toward the gendered significance of this disparity remains limited. Gender is defined as “the roles, personality traits, attitudes, behaviors, values and relative power and influence society ascribes to the two sexes on a differential basis.” There are indications that the male/female disparities in SLE risk, activity, and damage can be a function of gender-based social status or roles conferred by being a “woman’s disease,” suggesting observed differences may not only be biological but also a function of the under appreciation of SLE as a disease that affects males. One such indication is differences in diagnostic delay or the time between the start of symptoms and diagnosis, a common issue in many chronic diseases. A recent survey of >5000 patients with SLE in the United Kingdom found differences in the reported mean time to diagnosis from the first symptom varied by sex: 4.8 years for females and 6.5 years for males. This finding suggests that gender bias happens when, for whatever reason and in similar clinical diagnostic encounters, males are systematically belatedly diagnosed with SLE compared to females. Whether this is due to patient-specific factors that cause males to seek care later relative to females or a potential bias in the diagnostic workup because of the belief that SLE is a woman’s disease, is unknown. However, it could also be argued that males might be diagnosed later because of their own self-imposed delay to get to the doctor as studies have shown that females have higher medical care service utilization compared to males.

SLE could also be a stressor of inter-personal relationships, with the weight of dealing with a life-threatening illness resulting in marital discord, separation, or divorce. This issue has not been fully explored in patients with SLE save for a paper published in 1986 that indicated SLE did not significantly impact the risk of divorce. However, in the chronic disease literature, there appears to be gender disparity in the rate of partner abandonment in patients with chronic diseases. Specifically, female gender of the patient is the strongest predictor of separation or divorce. In a study of 515 patients with cancer or multiple sclerosis, the authors found that there was a six-fold increase in the risk of divorce after diagnosis when a female spouse was afflicted (21% vs 3%). Plausible reasons include husbands struggling to adapt to taking on the primary role of caregiving, housekeeping, and family maintenance in the relationship. Therefore, clinicians and healthcare providers are recommended to give special attention to the family life of patients with SLE to determine if there are early indications of relationship strife related to the course of the disease as the loss of a partner could adversely affect the quality of care and outcomes in patients.

Race/ethnicity as a multidimensional determinant of outcomes

SLE is more prevalent in patients of African, Hispanic, and Asian descent compared with non-Hispanic whites. In the United States, racial and ethnic minorities (e.g., blacks, Asians, native Americans, and Hispanics) have been shown to suffer significant organ damage, display poorer self-management skills, and experience higher burden of disease compared to non-Hispanic whites, resulting in worse SLE outcomes and higher rates of mortality. While the measures of increased risk in racial minorities implicate genetics as part of the causal hypothesis, increased morbidity and mortality in these populations may present a more complicated picture that cannot be explained by only genetics. For example, a recent study indicates that despite blacks representing 43% of prevalent patients with SLE in the United States, they comprise 14% of clinical trial enrollees, while whites comprise 33% of SLE cases but more than half of clinical trial enrollees. This may explain why some traditional treatment regimens for SLE are often ineffective for racial minorities. The underrepresentation of racial minorities in SLE clinical trials means that there may be limited access to effective therapeutic options in these populations.

The racial/ethnic differences in the epidemiology of SLE are the subject of another chapter in this book. Our emphasis here is the multidimensionality of race/ethnicity as a determinant of health outcomes in SLE. The status of being a racial minority is intricately linked to income level, occupation, accumulation of wealth, education attainment, and physical environment—all factors that are associated with increased risk of frequently diagnosed SLE outcomes such as cardiovascular disease, infections, renal damage, and cancers. However, published research in the realm of race/ethnic disparities have largely focused on only patients with SLE (with no general population comparators), and not how SLE contributes to the risk of these outcomes while accounting for the underlying differences by race/ethnicity that exist in the general population. For example, in the United States, incidence and prevalence estimates indicate higher rates of kidney failure, cancer, infections, cardiovascular and cerebrovascular diseases in most race/ethnic minorities compared to whites. These disparities also exist in SLE and persist even after accounting for other socioeconomic factors.

Understanding whether SLE contributes substantially to existing comorbidities gaps between whites and racial minorities can identify salient points of influence for efforts aimed at narrowing disparities in this realm. In addition, as the burden of SLE varies by race/ethnicity, such knowledge might help forecast the degree to which the white-racial minority gap could be expected to reduce or increase in the future due of shifting distribution of outcomes. From a population health perspective, this understanding may also be useful in planning and steering resources to deliver care to a growing population of patients with SLE with complex needs.