Low use of routine medical care among African Americans with high CKD risk: the Jackson Heart Study

African Americans, especially those with diabetes, hypertension, or a family history of chronic kidney disease (CKD), have two- to four-fold greater incidence of end stage renal disease (ESRD) or death when compared to their non-minority counterparts with similar CKD risk factors [1‐3]. Poor access to health care, more commonly reported among ethnic/racial minorities than non-minorities, is thought to partially contribute to African Americans’ excess CKD-related health risks [4, 5]. Receipt of routine medical care (RMC) facilitates receipt of important preventive care services and health education, [6] with lack of RMC contributing to ethnic/racial disparities in these services [7, 8].

While greater use of RMC is widely advocated as a potential solution to address disparities in CKD, African Americans at risk of CKD have been shown to use RMC less frequently than non-African Americans [5]. However, reasons for low use of RMC among African Americans with CKD risk factors are not well-understood. In studies of diverse populations, individuals with CKD risk factors such diabetes or hypertension have been known to have low perceived susceptibility to CKD [9‐11], and those with established kidney dysfunction have low rates of CKD awareness [12, 13]. These factors may contribute to limited engagement with the health care process. Little is known about how other sociodemographic factors, comorbidity, healthcare access (e.g. health insurance and type of coverage), or psychosocial factors (e.g. anger or stress) contribute to suboptimal RMC use among African Americans at risk of CKD. Improved understanding of additional factors associated with low use of RMC could inform efforts to eliminate disparities in CKD outcomes among African Americans.

We assessed low use of RMC among African Americans enrolled in the Jackson Heart Study (JHS) who were at risk of CKD incidence or progression. The JHS collects a unique battery of psychosocial questionnaires including assessments of stress, discrimination, anger and trust. Using this rich data we assess participants’ demographic, medical, socioeconomic and psychosocial characteristics associated with use of RMC thereby providing a more comprehensive evaluation of factors affecting RMC in African Americans with or at risk for CKD than currently available in the literature. Given the high burden of CKD in this group, understanding barriers to care will be critical to implementation of preventive interventions.

In this large cohort of African Americans with CKD or at increased risk of CKD, younger age, male sex, low educational attainment, tobacco use, lack of health insurance, and low comorbidity were associated with low use of RMC. Psychosocial factors (e.g., low trust, high stress, high daily and low burden of lifetime discrimination) were also associated with low use of RMC among this high risk group. These results suggest that interventions focused on increasing trust and reducing stressors in non-health related activities could encourage more preventive care for African Americans and promote wellness.

To our knowledge, this is the first study to simultaneously examine a number of factors associated with infrequent use of RMC among African Americans at high risk of poor CKD outcomes. The extent to which patients seek health care may directly affect their opportunities to have CKD detected and their CKD risk factors controlled, and their opportunities for education regarding the long-term health risks associated with CKD, particularly if that care is received episodically. While use of routine care creates opportunities for health education, preventive health services, disease management, and shared decision-making, these opportunities are less frequently encountered by African Americans than by whites [23, 24]. The reason for this difference is likely multifactorial. For instance, racial residential segregation may impact disparities in routine care, [25] as African Americans are more segregated from optimal healthcare facilities and information. This access to healthcare services directly relates to use of routine care [26‐28]. In African American populations, this use of routine care has been linked to an identified usual source of care [7, 29], yet ethnic and racial minorities are routinely less likely to have an identified usual source of care than their white counterparts [30]. As a result, individuals without a usual source of care are more likely to utilize the emergency department for their healthcare needs than individuals with access to routine care [31], resulting in an expensive and inefficient method of obtaining health services.

Despite these findings, differences in healthcare access alone may not fully explain disparities in routine care use between African Americans and whites. Psychosocial factors and cultural norms may also influence use of routine care [29, 32, 33]. Our findings are consistent with prior literature suggesting low trust as a major barrier to health care engagement by African Americans [34]. Low trust in medical care among ethnic and racial minorities has been associated with lower medication adherence, reduced rates of preventive health services, worsened blood pressure control, and varying degrees of shared-decision making [35‐40]. Factors contributing to low trust include patient perceptions of provider greed, discrimination, and the potential for medical experimentation based on the historical medical mistreatment of African Americans [41, 42]. Conversely, provider race concordance has been associated with higher levels of trust and patient engagement, [43‐46] which may be due to a more positive physician affect and higher degree of person-centered communication noted more frequently in racially concordant office visits [47, 48]. It remains unclear how patterns of patient-provider interactions, for example, the degree of continuity of care by providers contribute to feelings of low trust among JHS participants. Further, we found incongruence between perceived discrimination and use of RMC, with high daily discrimination, yet low burden of lifetime discrimination to be associated with low RMC use. The latter finding contradicts our hypothesis that perceived discrimination would be associated with low use of RMC, but aligns with other JHS studies showing higher degrees of perceived burden of lifetime discrimination to be associated with more favorable outcomes (e.g. lower risk of left ventricular hypertrophy) [49]. This is hypothesized to be related to the aggregation of components in the burden of lifetime discrimination assessment, or potentially an age-related phenomenon. Evaluation of the individual questions in the burden assessment may produce different results.

Our findings suggest patterns of healthcare utilization differ between younger and older African Americans. Younger JHS participants were less engaged in RMC than older participants, aligning with prior studies showing young adults in the general population have less use of ambulatory medical care, [50, 51] and rate their health as a lower priority than adolescents or older adults [52]. Prior work has shown young adults with hypertension to be less frequently diagnosed by a provider than older adults with similar blood pressures, [53] receive lifestyle education more inconsistently, [54] and have high rates of hypertension unawareness [55]. Further, young adults with established CKD are at high risk of complications related to poor self-management skills and non-adherence, especially during transitions in care, [56] and are particularly vulnerable to poor CKD outcomes. While several studies have demonstrated improved survival on dialysis among older African Americans compared to whites, [57‐60] young adult African Americans aged 18–30 have been shown to suffer a two-fold increase risk of death compared to age-matched whites and older African Americans [61, 62]. Tailored interventions promoting early engagement in RMC among young African Americans may mitigate CKD risks when the potential long-term impact on CKD outcomes is greatest.

Our study has limitations that should be noted. First, JHS participants reside in a single southeastern US metropolitan area with a high prevalence of CKD risk factors, which limits the generalizability of the study findings to African Americans in other areas of the US and to individuals residing outside of the US. Further, we did not have detailed information on specific characteristics that may influence RMC such as past personal or familiar medical experiences or provider race concordance, nor were we able to identify the directionality of our findings given the cross-sectional nature of our study. For example, we cannot determine if younger individuals were more likely to be diagnosed with CVD because of engagement in RMC or whether they were more engaged in care because of pre-existing health problems. Finally, to ensure sufficient power for outcome assessment, we chose to stratify age at the JHS cohort median. Therefore, inferences drawn from this dichotomous age categorization may be less informative than other age categories (e.g. young adult, elderly) which were not explicitly examined. Strengths of our study include the use of the Jackson Heart Study, a large, well-characterized cohort of African Americans, which is unique in its detailed measurements of psychosocial factors related to health.

Among African Americans with CKD or at increased risk of CKD, those who were younger, and males were more likely to report low use of RMC. Low trust was associated with low RMC use in all age groups. Differing barriers to engagement in RMC suggest assumptions should not be made about reasons for not seeking RMC among African Americans, as the rationale behind such behaviors are likely based on more than just self-reported race alone. Efforts to identify patients at risk of CKD incidence and progression in the settings they are most likely to receive care and efforts to address attitudes and perceptions which may hinder care represent important potential targets for future CKD prevention efforts.