Introduction

Medical mistrust informed by experiences of discrimination is associated with lower acceptance of medical care, especially among racial and ethnic minorities. No study has examined medical mistrust in patients with cirrhosis, a stigmatized condition that disproportionately affects racial and ethnic minority groups. Therefore, we aimed to quantify perceived discrimination and medical mistrust among patients with cirrhosis, a high-risk condition for the development of hepatocellular carcinoma.

Methods

We prospectively enrolled adult patients diagnosed with cirrhosis at four large U.S. healthcare systems to complete a telephone survey. Survey measures were selected using a health disparities conceptual model, adapted from Warnecke et al., and included measures of perceived discrimination and group-based medical mistrust scale. Race and ethnicity were self-reported. Patient demographic data were abstracted and cirrhosis diagnosis was confirmed using manual review of the electronic medical records. Chi square tests were used to compare categorical data.

Results

Among 1,683 potentially eligible patients with cirrhosis, 519 (30.8%) completed the survey. The cohort was racially and ethnically diverse (49.3% White, 29.4% Black, 16.3% Hispanic, 5.0% Other) and included 74.0% men and 26.0% women. Patients were also diverse in total household income (59.1% <$50K/year), educational attainment (39.6% high school or less), and medical insurance (56.3% Veterans Affairs, 54.3% Medicare, 34.1% private, 11.8% Medicaid, 3.5% safety-net assistance or uninsured).

Black and Hispanic patients were more likely than White patients to endorse suspicion of information from their doctor (19.9% and 7.8% vs. 4.9%, respectively; p<0.001) and in modern medicine (21.9% and 9.7% vs. 8.2%; p<0.001), as well as feeling their doctors sometimes hide medical information (21.1% and 8.7% vs. 7.8%; p<0.001) and do not have their best interests in mind (16.4% and 7.8% vs. 7.3%; p=0.01). We found racial and ethnic differences in perceived discrimination, with Black and Hispanic patients more likely than White patients to believe they are not being treated the same as others (28.8% and 12.6% vs. 6.9%; p<0.001) and do not receive the same medical care (30.8% and 12.6% vs. 6.5%; p<0.001).  Finally, Black and Hispanic patients were more likely than White patients to report worry about discrimination in the past year (54.1% and 30.1% vs. 15.5%, respectively; p<0.001) and experience discrimination in their daily life across nearly all measures (all p<0.05).

Conclusion

There are significant racial and ethnic differences in perceived discrimination and medical mistrust in patients with cirrhosis, which could explain worse health outcomes among racial and ethnic minority groups. Addressing racial and ethnic differences in trust and perceptions of discrimination (e.g., via implicit bias training, improving patient-provider communication) could improve quality of care for all patients with cirrhosis including receipt of screening for hepatocellular carcinoma.