In our study of >1,300 HIV-infected patients attending more than 3,000 ambulatory visits with their HIV care providers, we found that African Americans expressed, on average, lower levels of trust in their providers than did white patients. African Americans were also less likely than whites to be receiving ART, to adhere to ART, and to achieve viral suppression. These disparities in HIV care and outcomes were observed even when African Americans expressed complete trust in their health care providers.
Trust is thought to play a strong role in explaining racial disparities in HIV care. Studies have demonstrated that suspicions about HIV disease and antiviral treatments run high among African Americans in particular. In a national survey of African Americans conducted in 2002 through 2003,10
44% of respondents agreed with the statement, “People who take the new medicines for HIV are human guinea pigs for the government.” Conversely, a minority of African Americans (38%) agreed, “The medicines used to treat HIV are saving lives in the black community.” Given this level of skepticism about ART, it is not surprising that African Americans are less likely to use and adhere to ART. One might expect that providers who engender trust in their patients might be able to mitigate this skepticism, improve acceptance and adherence to ART among African American patients, and thereby reduce racial disparities in HIV care and outcomes. Findings from the national HIV Cost, Services, and Utilization Study lent credence to this hypothesis by demonstrating that patients' distrust of their health care providers was associated with a lower likelihood of believing in the efficacy of ART, which was in turn associated with lower ART adherence.25
We also found that trust was associated with ART adherence and that disparities in adherence were of lower magnitude when African-American patients expressed complete trust in their providers. This finding suggests that enhancing trust among African American patients could serve as an avenue to reducing racial disparities in ART adherence and possibly in outcomes resulting from improved adherence, including avoidance of virologic failure and ART resistance, and long-term survival.
Our findings, however, also suggest that enhancing trust is not likely to be a panacea for racial disparities in HIV care. Trust in providers was not associated with receiving ART in our study. In prior studies, both Altice et al. and Whetten et al. found trust in providers to be associated with acceptance and use of ART, respectively.16,17
The difference between our findings and those of these previous studies may relate to the use of different measures of trust, or to differences in study populations. Our study took place in an Eastern, inner-city, academic health center, whereas these prior studies took place in prison clinics in the Northeast17
and at infectious disease clinics across the Deep South.16
The difference in findings across these varied settings may reflect the importance of context in studying trust and its effects on health care.
Trust also was not associated with viral suppression in our study, despite being associated with ART adherence. Our adherence measure was limited in that it was both self-reported and represented a single, 3-day snapshot of adherence just before the clinic visit. Although this method is commonly used in clinical research and has been validated in prior studies,21,22
the lack of correlation between our findings for adherence and those for viral suppression may reflect limitations in this adherence measure. Prior studies found that patients overestimate their actual adherence26,27
and are often more adherent to ART in the days just before a clinic visit.28
This may help explain our relatively low rates of viral suppression despite high self-reported adherence in the 3 days before the clinic visit. It should also be noted that some patients in our viral-suppression analyses were not receiving ART and would not be expected to have suppressed viral load. Of the 1,799 visits in which patients were receiving ART and reported complete 3-day adherence, viral suppression (≤50 HIV RNA copies/ml) was observed at 867 (48.2%). At a more-conservative threshold of 400 copies/ml, the number considered to have a suppressed viral load was 1,132 (62.9%), a rate identical to that found in a prior study among patients classified as having “consistently high” adherence by using the electronic Medication Event Monitoring System (MEMS).29
Several other aspects of our study limit our ability to draw firm conclusions about the role of trust in HIV care. First, our measure of trust consisted of a single, global rating, and it may be that multi-item scales would have more fully captured the concept of interpersonal trust. Our trust item was not pretested by using cognitive interviews or other methods to evaluate survey items. However, the fact that the item addresses trust in a simple and direct fashion, and the finding that trust scores varied in expected ways by race, that they were associated with ART adherence, and that they operated differently from ratings of the quality of patient–provider interactions, all suggest that this global item served as a reasonable measure of trust in one's provider.
Second, we measured only trust in providers. It may be that even when patients trust their providers, distrust of health care institutions or medications may influence their acceptance and use of ART.16
Third, although we directly measured patients' trust in their principal HIV care provider, we did not have data on provider continuity, the number of times the patient had seen that provider, or the number of other providers the patient had seen recently, all of which may have influenced either the patient's trust or adherence. Finally, as noted earlier, the relevance and impact of trust may vary across settings, and our findings may not be broadly generalizable.
The patient–provider relationship is a fundamental component of high-quality health care delivery, and interpersonal trust is the material on which these relationships are built. The consistent finding of lower trust in health care providers among African-American patients suggests that distrust may play a role in racial disparities in health care quality, and that enhancing trust among African Americans may be a path to reducing disparities. Our results suggest that greater trust is likely to be necessary but not sufficient to reduce disparities in HIV care. Engendering interpersonal trust may have its greatest role in improving ART adherence. It is important to recognize that African American distrust of health care providers in the United States is deeply rooted in the larger context of race and racial discrimination, both historic and current.25,30
Enhancing patient trust—or more aptly, provider trustworthiness31
—will require changing not only our attitudes and behaviors but also our institutions.32
Doing so may help in accomplishing the large and pressing task of eliminating racial disparities in the quality and outcomes of HIV care.