# Measuring (Mis)trust in the age of COVID-19: viewpoints of vaccine clinical trial participation among individuals living with sickle cell disease

## TL;DR

This study explores how medical mistrust and other factors influence views on participating in COVID-19 vaccine trials among people with sickle cell disease in the U.S.

## Contribution

The study provides new insights into how disease severity and infection worry, rather than mistrust, influence vaccine trial participation views among individuals with sickle cell disease.

## Key findings

- Higher worry about COVID-19 infection was significantly linked to stronger support for vaccine research participation.
- Greater SCD severity was associated with higher agreement on the utility of vaccine research for self and family.
- Medical mistrust was inversely related to agreement with the utility of vaccine research.

## Abstract

COVID-19 vaccine efficacy was determined by the participation of individuals from diverse backgrounds in clinical trials. While these trials recruited participants with chronic conditions, little is known about how sentiments of mistrust affected the views of vaccine trial participation. The aim of this study is to examine the relationship between self-reported institutional medical mistrust and views on the importance and utility of COVID-19 vaccine research participation among adults living with sickle cell disease (SCD) in the United States.

This cross-sectional study is part of a larger longitudinal study aimed at understanding the lived experiences of individuals living with SCD in the United States during the COVID-19 pandemic. Data from the first wave of the longitudinal study, collected June– December 2020, were used for the analyses (n = 185). Two single-item variables ascertaining the utility of participation in clinical trial research for COVID-19 vaccines were examined. Institutional medical mistrust was measured utilizing a modified medical mistrust index. Multivariable binary logistic regression models were utilized, adjusting for applicable sociodemographic, behavioral, and clinical variables.

A majority of study participants agreed with statements regarding beliefs about the importance of participating in vaccine research (71.4%) and the utility of vaccine research for family and self (60.0%). Findings indicated that having any level of worry of COVID-19 infection was significantly associated with greater agreement with the importance of participating in COVID-19 vaccine research (OR = 3.41, 95% CI 1.346–8.641, p = 0.01) and higher agreement with the utility of vaccine research for themselves and their families (OR = 3.54, 95% CI: 1.332–9.403, p = 0.01), after adjusting for covariates. Agreement with the utility of vaccine research participation was also found to be associated with higher SCD severity (OR = 1.26, 95% CI: 1.043–1.537, p = 0.02). In contrast, higher medical mistrust was inversely associated with agreement of this statement (OR = 0.44, 95% CI: 0.222–0.89, p = 0.02).

Our findings reveal that for individuals living with sickle cell disease, the worry of infection and the severity of their individual disease were more important in shaping views towards vaccine research participation than medical mistrust.