Knowledge of Genome Sequencing and Trust in Medical Researchers Among Patients of Different Racial and Ethnic Groups With Idiopathic Dilated Cardiomyopathy

Abstract

Importance: Cardiovascular disease contributes outsized mortality in patients from underrepresented racial and ethnic groups. Understanding levels of trust in medical researchers and knowledge of genome sequencing may help identify barriers to research participation and develop strategies to educate patients about the role of genetics in cardiovascular disease.

Objective: To assess racial and ethnic differences in trust in medical researchers and genome-sequencing knowledge among patients with idiopathic dilated cardiomyopathy and determine the association between trust in medical researchers and genome-sequencing knowledge.

Design, setting, and participants: This cross-sectional study conducted by a consortium of 25 US heart failure programs included patients with idiopathic dilated cardiomyopathy defined as left ventricular systolic dysfunction and left ventricular enlargement after excluding usual clinical causes. Enrollment occurred from June 7, 2016, to March 15, 2020.

Main outcomes and measures: Percent distributions, means, and associations of genome-sequencing knowledge scores and research trust scores for Hispanic, non-Hispanic Black (hereafter referred to as Black), and non-Hispanic White participants (hereafter referred to as White).

Results: Among 1121 participants, mean (SD) age was 51.6 (13.6) years with 41.4% Black, 8.5% Hispanic, and 43.4% female. After accounting for site effects, the level of genome-sequencing knowledge was lower in Hispanic and Black participants compared with White participants (mean score difference, -2.6; 95% CI, -3.9 to -1.2 and mean score difference, -2.9; 95% CI, -3.6 to -2.2, respectively). The level of trust in researchers was lowest in Black participants (mean score, 27.7), followed by Hispanic participants (mean score, 29.4) and White participants (mean score, 33.9). Racial and ethnic differences remained after adjusting for education, age at enrollment, duration of dilated cardiomyopathy, and health status. A higher level of trust was associated with a higher level of genome-sequencing knowledge within different racial and ethnic groups.

Conclusions and relevance: In this cross-sectional study, large racial and ethnic differences in levels of genome-sequencing knowledge and trust in medical researchers were observed among patients with dilated cardiomyopathy. Findings from this study can inform future studies that aim to enhance the uptake of genomic knowledge and level of trust in medical researchers.

Figure 1.. DCM Precision Medicine Study Participant Recruitment and Analyses

Figure 2.. Percent Distribution of Genome-Sequencing Knowledge Scores Among Patients With Idiopathic Dilated Cardiomyopathy, by Race and Ethnicity

A, Levels of genome sequencing limitation knowledge were defined low for 0 to 5, medium for scores 6 to 9, high for scores 10. The differences between Hispanic and non-Hispanic White participants (hereafter referred to as White) and between non-Hispanic Black participants (hereafter referred to as Black) and White participants are statistically significant (N = 1066 [87 Hispanic participants, 434 Black participants, and 545 White participants]). Estimated percentages in each ordinal category at a typical site (ie, one at the mean or mode of the random-effects distribution) were obtained using a generalized linear mixed model with a multinomial outcome, cumulative logit link, and a site random effect. Model parameters were estimated using residual participant-specific pseudo likelihood, and the Kenward-Roger corrected covariance matrix was used for inference. Wald P values for differences in these percentages were obtained using the delta method with the standard normal distribution. Percentages may not sum to 100 due to rounding. B, Levels of genome sequencing benefit knowledge were defined low for 0 to 5, medium for scores 6 to 9, high for scores 10. The differences between White and Black participants are statistically significant (N = 1066 [87 Hispanic participants, 434 Black participants, and 545 White participants]). Estimated percentages in each ordinal category were obtained from a generalized linear model with a multinomial outcome and the cumulative logit link that did not include a site random effect because the estimation routine for the generalized linear mixed model converged with an estimated between-site variance on the boundary constraint of 0 when it was included. Wald P values for differences in these percentages were obtained using the delta method with the standard normal distribution. Percentages may not sum to 100 due to rounding.