526 - Attitudes, Trust, and Confidence about Clinical Research: Parent/Caregiver Perspectives

Friday, April 28, 2023

5:15 PM – 7:15 PM ET

Poster Number: 526
Publication Number: 526.117

Kathleen E. Barber, Atrium Health, Charlotte, NC, United States; Natasha R. Montoya, Atrium Health, Charlotte, NC, United States; Gang Liu, Wake Forest School of Medicine of Wake Forest Baptist Medical Center, Charlotte, NC, United States; Michael B. Duncan, Atrium Health Wake Forest Baptist, Charlotte, NC, United States; Tiffany Linville, Levine Children's Hospital, Charlotte, NC, United States; DENNIS ERNST E. Schellhase, Wake Forest School of Medicine of Wake Forest Baptist Medical Center, CHARLOTTE, NC, United States; Nathan Fleishman, Atrium Health Wake Forest School of Medicine, Charlotte, NC, United States; Christine B. Turley, Atrium Health Wake Forest School of Medicine, Charlotte, NC, United States

Presenting Author(s)

Christine B. Turley, MD (she/her/hers)

Clinical Professor and Vice Chair for Research
Atrium Health Wake Forest School of Medicine
Charlotte, North Carolina, United States

Background: Distrust and mistrust in clinical research present a challenge for evaluating and delivering new treatment options to patients. Recent events have considered these topics in the general population, revealing many negative outcomes. Reduced participation in clinical research and reduced confidence in research findings can slow uptake of advances and worsen health disparities. Understanding caregivers' perspectives will be important in learning how to broaden enrollment in research as an important element in increasing health equity.

Objective: Evaluate the attitudes and orientation of caregivers to clinical research within pediatric specialty outpatient settings

Design/Methods: A 10-item survey was developed iteratively. Questions included overall attitude towards research, trust in researchers, confidence in understanding research, perceptions of research engagement of racial/ethnic groups, and demographics. Surveys were offered to English and Spanish language caregivers upon clinic arrival. Responses were anonymous. Descriptive statistics were used to analyze survey data.

Results: Of 492 surveys distributed, 367 surveys (75%) had complete (n=349) or partially complete (n=18) responses from 2 pediatric specialty clinics. Respondents were mostly female (81%) and ages 20-49 y.o. (74%); predominant races were Black (21%), and White (61%), with 14% Hispanic ethnicity. (Table 1) Caregivers largely had a positive attitude toward medical research (86%), felt trust in being given all necessary information when asked to participate in research (85%), and felt likely to have more confidence in research if given information about research where their child receives care (82%). (Table 2) When asked whether their racial/ethnic group was treated differently when it comes to research, fewer than half (46%) of respondents were favorable/strongly favorable about how their group is treated, 30% were neutral, while 24% were unfavorable/strongly unfavorable in how their racial/ethnic groups are treated (p < 0.01, all levels of favorability). (Table 2, Figure 1)

Conclusion(s): The strong overall favorable view of research reported is unexpected given current societal polarization. With the perceptions regarding differences in how racial and ethnic groups are treated during research, an important opportunity to address these beliefs will be needed to increase diversity in pediatric clinical research. Work to further analyze this data and extend the project to other clinic types is underway. Building on this knowledge may be important in increasing health equity.