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Beyond the Guinea Pig Myth: Understanding Complex Attitudes Toward Clinical Trials Participation in a Community
J Edward Murrell1, Ashleigh Allgood1, Arya Tamhane2
1Department of Health Services Administration, School of Health Professions, University of Alabama at Birmingham, Birmingham, AL, USA.
None:
The urgency to enhance cancer clinical trial enrollment among racial and ethnic minority patients is underscored by the rise in novel therapies. This study examines referral mechanisms from a community-based oncology care clinic to an academic medical center, evaluates the clinical trial knowledge of minority groups, and explores perceptions and attitudes toward trials. Using a sequential explanatory mixed methods research design, the Clinical Trial Knowledge Survey was administered to patients seen at the Hem/Onc clinic in a community medical center. Descriptive statistics were calculated, and multivariate analysis was used to examine associations between variables using STATA 18. Qualitative data from 11 semistructured interviews were analyzed by two independent investigators using NVivo 14. Themes were identified through a combination of deductive and inductive approaches. Of the 502 mailers sent, 98 individuals responded (response rate of 9.56%). The average age of participants was 54 years, predominantly single and African American. The majority of the respondents (62%) agreed that patient participation is crucial for generating new and effective treatments. Then, 65% believed that clinical trials are typically conducted on drugs presumed to be effective. However, 32.99% of the respondents perceived participation in clinical trials as a frightening experience. Three qualitative themes emerged: (i) While clinical trial awareness was limited, willingness to participate was strongly endorsed. (ii) Potential participants obtain knowledge about clinical trials from multiple sources, impacting their attitudes toward clinical trials. (iii) There is a need to tailor educational strategies to increase awareness of and participation in clinical trials. The findings emphasize the critical role of awareness and tailored, culturally congruent educational strategies that are crucial to bridge the knowledge gap, alleviate hesitations, and enhance cancer clinical trial participation rates among racial and ethnic minorities.
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