Our study is the first to demonstrate that, among patients with SLE, AA patients were more likely than WH patients to perceive racism in the healthcare setting. This difference in perceived racism remained significant despite controlling for patient background information, identity traits and healthcare experiences. Besides AA race, female gender and lower trust in physicians were also significant predictors of high perceived racism. We also demonstrated racial disparities in SLE-related disease outcomes, with AA patients having more SLE-associated organ damage and depression than WH patients in unadjusted analyses. However, after further adjustment for relevant sociodemographic and clinical variables, racial disparities in SLE outcomes were no longer significant. Finally, we found a significant relationship between perceived racism and depression among AA patients with SLE.
Determinants of perceived racism in healthcare
Consistent with other studies of racial discrimination in healthcare, perceived racism was more prevalent among AA patients than WH patients in our study of patients with SLE. This racial difference in perceived racism may be due to variation in experiences. Greater perceived racism may also be grounded in real-life experiences, more so in AA than in WH patients. AA patients may have had more personal experiences to draw from whereas WH patients may be basing their ratings based on what they had heard from others. It is also possible that WH patients do not think that there is validity to the claim of discrimination in care; responses of WH patients to the perceived racism statements may be based more on a strong personal belief that racial discrimination in the healthcare system is rare than on actual experiences. The proportion of WH and AA patients reporting high levels of perceived racism is similar to what others have found.9 ,10 Rates of perceived racism are also higher when assessed using a measure of general perceptions of racism, such as the measure used in this study, than when using a measure of personal experiences of discrimination.9 Regardless, in studies of multiple clinical patient populations, AA patients more frequently report race-based discrimination, either based on personal healthcare experiences or in the healthcare system in general compared with WH patients.9–12
In parallel, having higher trust in physicians was independently associated with less perceived racism in healthcare in our cohort of patients. Other studies have shown a similar inverse relationship between trust in providers and perceived racial discrimination in other patient groups.10 ,13 ,37 ,38 These studies primarily treated low levels of trust in providers as consequences of perceived discrimination. At the same time, most of the studies are cross-sectional in design, leaving open the possibility that perceptions of discrimination are a consequence of extent of trust in physicians. Regardless, trust in providers is a modifiable factor that can be targeted to reduce high perceived racism in healthcare. Moreover, AA patients with SLE are more commonly classified as non-adherent to medical recommendations than WH patients with SLE, and this limitation in adherence may be related to low trust in providers.39
Our study also demonstrates that racism was more often perceived by women compared with men with SLE. Other studies examining self-reported racism in non-healthcare settings such as the workplace and during encounters with law enforcement have found that men report a higher prevalence than women.40 ,41 During healthcare encounters, though, racial discrimination is more frequently reported by women than by men.11 ,42 As we have a limited number of men in the current study due to expected female predominance in SLE, further investigation in this matter is warranted.
We found that perceived racism was also more common among patients with SLE with higher education, consistent with what others have found.41 It has been postulated that those in a higher socioeconomic position are more likely to be exposed to situations in which they experience discrimination or are more aware of subtle forms of discrimination.12 Belief that powerful others (eg, providers) could significantly affect health outcomes was related to having lower perceived racism in our study. Patients who have this belief may be highly reliant on providers to make medical decisions for them.43 In turn, they may be less likely to believe that providers and the healthcare system are highly biased.
Nevertheless, our study suggests that patient background, identity/socialisation characteristics and reported healthcare experiences do not fully explain racial disparities in perceptions of racism in healthcare. This is consistent with another study of 6299 adults in which racial differences in patient perceptions of healthcare system-wide bias persisted after controlling for demographics, source of care and patient-physician communication variables.44 As both studies only measured patient-level characteristics, there is a possibility that unmeasured provider, healthcare system and other environmental variables are the appropriate explanatory variables. For example, limited medical resources and unconscious bias among providers have been associated with racial differences in reported perceptions.11 ,44
Racial disparities in SLE clinical outcomes
We did not find race to be associated with SLE disease activity, a finding similarly found by Karlson et al.45 In contrast, AA race was significantly associated with having greater disease activity among patients in the Lupus in Minorities: Nature versus Nurture (LUMINA) cohort.2 ,4 The lack of association in our study may be due to participation bias. Patients with more severe disease may have been less inclined to participate in our survey. It is also possible that our measure of disease activity was not sufficiently sensitive to detect differences associated with race. We used the SLEDAI while the LUMINA studies used the Systemic Lupus Activity Measure-Revised (SLAM-R) to measure disease activity. While the SLAM-R is strongly correlated with the SLEDAI, it may more readily detect aspects of disease activity important to patients.4 ,46
We found AA race to be associated with higher SLE-related cumulative organ damage in unadjusted analyses, but this association did not persist after adjusting for sociodemographic factors and disease duration, consistent with prior studies.2 ,3 ,45 Consequently, perceived racism was not found to be an important explanatory variable for racial differences in SLE organ damage. In Karlson et al's study,45 cumulative organ damage was strongly associated with age and duration of disease, and weakly associated with lower caloric intake, occupational prestige and disease activity at diagnosis. In the LUMINA cohort, AA patients had higher damage index scores than WH patients.3 After adjusting for disease duration, though, AA race was no longer a significant predictor of SLE damage accrual.3
A similar pattern was observed for depression in that AA participants were more likely to have moderate-severe depression compared with WH patients in unadjusted analyses but not after controlling for socioeconomic status, disease duration and disease activity. Racial differences in the prevalence/incidence rates of depression among patients with SLE have also been found by others, but not all.47 ,48 Regardless, rates of certain depressive and anxiety disorders have been reported to be higher among AA patients than WH patients in other patient groups and have been accounted for by socioeconomic status differences.49 In SLE, higher disease activity may also increase vulnerability to depression.25
We also found an association between perceived racism in healthcare and depression among AA patients with SLE. This association was specifically relevant among AA patients with low income, with greater educational attainment, who are not married and with private health insurance. Indeed, almost without exception, studies of discrimination and mental health find that higher levels of experienced discrimination are associated with poorer mental health status.15 However, we did not find an association between perceived racism and either SLEDAI or SLICC damage index. Indeed, not all studies have found a negative impact of perceived discrimination on health.11 In one particular cross-sectional study, AA patients with spinal cord injuries who reported more discrimination also reported better occupational functioning.50
Limitations of the study should be noted. First, the study is cross-sectional in design. While we propose that general perceptions of racial discrimination may lead to poorer mental health, it is also possible that these perceptions are a consequence of mental health status. Hence, it is noteworthy that a few prospective studies have shown evidence that perceived discrimination is associated with subsequent reports of depression.15 Second, our measure of perceived racism in healthcare has limitations. It assesses general perceptions of racism but not personal experiences with discrimination. Personal experiences of racial discrimination may be more strongly tied to poorer health outcomes than general perceptions of discrimination. In a comparison of the different measures of perceived discrimination in patients with diabetes, the measures had variable associations with perceptions of care but not with actual receipt of recommended screenings for disease complications.9 Our measure of perceived racism is also based on patient report which is susceptible to recall bias. Measuring the impact of actual occurrence of discriminatory events, though, is impractical and may not be possible. Finally, the extent to which the results of the study can be generalised to other racial/ethnic minority groups is unclear. Nevertheless, in the USA, AA patients most frequently report race/ethnicity-based discrimination during healthcare encounters, and are most likely to have negative consequences from it.11
Despite these limitations, this study advances our understanding of the correlates of perceived racism in healthcare by demonstrating that AA race, female gender and lower level of trust in providers are associated with higher perceived racism in healthcare for patients with SLE. It also shows that racial disparities in the perceptions of racism in healthcare persist despite accounting for patient background, identity/socialisation characteristics and healthcare experiences. Moreover, the study demonstrates that higher perceptions of racism are associated with more depression in patients with SLE, which disproportionately impacts AA patients. Future research should explore the inverse relationship between trust in physicians and perceived racism to determine whether low levels of trust are a cause or consequence of perceived racism and whether interventions to enhance physician-patient trust can reduce perceived racism and lead to improved health outcomes.