Our study found that patient perceptions of the quality of their healthcare provider’s communication in the past year are significantly associated with current trust toward the medical profession among adults with sickle cell disease, independent of a number of potentially confounding patient demographic, clinical, and attitudinal characteristics. Our study suggests that among patients with sickle cell disease, trust is associated with the patient’s perceptions of the interpersonal quality of the medical interaction, independent of the individual patient’s own attitudes or general outlook on life. This result is consistent with the findings of Jacobs et al. who found in their qualitative study of a group of African Americans that technical and interpersonal competence (including perceptions of the physician’s caring, empathy, taking the time to listen, honesty, and keeping the patient’s best interests at heart) were the primary factors which engendered trust in physicians23
. Furthermore, these findings are consistent with a large body of research in other patient populations which has shown that patient perceptions of the quality of their provider’s communication are strong determinants of the trust that patients have in physicians9,10,15,24–26
As this is one of the first systematic examinations of trust among adults with sickle cell disease, a predominately African American patient population in the U.S., it is interesting to note that the mean trust score for our sample (53 on a 0 to 100 scale), is close to the mean trust score found using this same measure among a national sample of 502 predominately white adults with health insurance (mean trust
50 on a 0 to 100 scale)12,27
. This comparison may be compromised by the fact that members of minority groups were not well-represented in the development and validation samples in which the trust instrument was initially tested. Although no systematic racial differences in the responses to the items were found in these developmental studies, the scale developers noted the importance of future studies which would validate their scales specifically in minority populations. Nevertheless, a comprehensive examination of the conceptual and empirical literature on trust gives us greater confidence in the construct validity of this trust scale in African American populations. This scale was designed to assess trust in medical professionals across five conceptual dimensions (fidelity, competence, honesty, privacy/confidentiality, and a “global” dimension). Qualitative studies of African American and other minority patients which have attempted to assess the determinants of physician trust among these groups have described dimensions which greatly overlap with the dimensions assessed by the trust measure used in our study23,24
. Therefore, although the instrument was not specifically developed for African American populations, it is reasonable to believe that it addresses many aspects of trust that are salient to African Americans.
It is interesting to note that in our sample of sickle cell disease patients, those with higher education and those currently in school had lower trust than patients with lower education or those not in school. Persons with sickle cell disease with higher educational attainment may have different expectations for the patient–physician relationship than persons with lower education. As the majority of sickle cell patients who seek hospital care are on medical assistance or other forms of public health insurance28
, medical professionals who care for this population may assume lower educational levels among these patients. Perhaps these assumptions change provider behavior such that the expectations of those patients with higher education are not met, thus causing these individuals to develop lower trust toward the medical profession.
In our study, patients with more frequent hospital utilization for pain also had lower trust. Hospital utilization is a frequently used, though imperfect, measure of sickle cell disease severity. Among the general population, patients with lower trust have been shown to report worse self-reported health status. It is possible that patients with worse self-reported health perceive their interactions with healthcare providers as having “failed”, and thus these patients may develop lower trust in providers generally. Our finding, therefore, could reflect this general finding. It is also possible that patients with more frequent hospital utilization have less trust in primary care services, thus contributing to less frequent outpatient utilization and less stable disease control. While data on the association of outpatient healthcare utilization and inpatient sickle cell utilization is surprisingly limited, Epstein et al. recently found a marginally significant positive association
between outpatient utilization and emergency department use among adults with sickle cell disease29
, and Carroll et al. recently found that adults with sickle cell disease categorized as “high utilizers” of inpatient care actually have more outpatient visits than those categorized as “low utilizers”30
. Another plausible explanation for our finding of more frequent hospital utilization being associated with lower trust is that medical professionals may have more negative attitudes towards those sickle cell patients with more frequent hospital utilization. One study which used hypothetical vignettes describing children with sickle cell disease found that nurses recommended lower pain medication doses for more frequently hospitalized children compared to less frequently hospitalized children even though the nurses did not rate the intensity of the children’s pain any differently31
. Negative attitudes toward patients with more frequent hospital utilization could in turn negatively affect the quality of medical professionals’ interactions with these patients, thus affecting patient trust.
Finally, we found that sickle cell patient’s dispositional optimism, which appraises the extent to which individuals have positive expectations for the future, was independently related to trust. This finding is consistent with the conceptual and operational definition of trust utilized in the development of the measure used for this study15
. Despite the relationship between optimism and trust observed in this study and hypothesized to exist conceptually, interpersonal healthcare experiences in the form of provider communication ratings maintained a strong and highly significant independent association with trust even after controlling for the association between optimism and trust.
Our study has several limitations. As a cross-sectional study, causal inferences regarding the relationships between previous provider communication and trust should be made with caution. The association we found between provider communication ratings and trust could be explained if persons with higher levels of trust toward medical professionals are predisposed to providing more positive ratings of provider communication than persons with lower levels of trust. Studies employing longitudinal designs are required in order to assess the potentially complex causal mechanism which relates patient trust to patient ratings of provider communication.
Also, because we sampled patients seeking healthcare at a single urban academic medical center, our results may not be generalizable to the larger sickle cell population. Patients who actively seek care from a medical center may have higher levels of trust than patients who prefer to manage their conditions at home or in other settings. Additionally, the patients in our study may have been sicker than those patients who do not, or only infrequently, seek care. Our study should be replicated in a community-based sample of sickle cell patients who receive their care in a variety of settings to determine the consistency of our findings.
Patient trust in physicians is necessary for the ideal patient–physician relationship, and is an essential indicator of the quality of medical care32
. While provider communication is often thought of as a dimension of trust, it is important to be clear conceptually as to what exactly this means. As a dimension of trust, provider communication represents an aspect of providers which may engender, or fail to engender, trust in patients. Our study of adults with sickle cell disease found that patient ratings of the quality of their provider’s communication are associated with patient trust, even after adjustment for potentially confounding patient characteristics. If our findings are shown to generalize to the sickle cell patient population at large, then sickle cell patient trust towards medical professionals might be considered for use as an indicator of healthcare quality for this population. Interventions aimed at improving the interpersonal skills of medical professionals who interact with sickle cell disease patients may be an important avenue towards improving clinical and patient perspective outcomes of care for all persons with the disease.