Diverse Patients' Experiences of Recruitment and Participation in Cancer Clinical Trials

Authors: Ginossar, T., Burgess, E., Rodeman, J., Dunn, B., Guest, D. Sussman, A.

Category: Behavioral Science & Health Communication
Conference Year: 2020

Abstract Body:
Little is known about experiences of cancer patients who participated in Cancer Clinical Trials (CCT). This study aimed to qualitatively explore patients experiences of such participation, including their perceptions of physicians' communication, decision making, and assessments of benefits and disadvantageous. Semi-structured interviews were conducted with 26 cancer patients who participated in CCT in a minority-serving academic center. Thematic analysis methods were used. Patients reported participation in CCT as largely positive due to better medical attention compared to standard of care, satisfaction with providers' communication, altruistic motivation, and clinical outcomes, or lack of other therapeutic options. Participants were often unclear about the financial considerations involved and hence these considerations served as a potential barrier or facilitator to participation. When making the decision to participate, interviewees placed a considerable degree of trust in their doctors. Participants who demonstrated high health literacy and knowledge of their diagnosis and treatment, including CCT expected and received discussion with providers about CCT and utilized diverse information sources, whereas those with low health literacy relied on physicians' top-down information. If offered to participate in a CCT in the future, most will say yes, even if they are somewhat fearful and unclear on the details of the CCT. Compassionate, clear, and on-going communications following the point of decision-making increase patient satisfaction with the CCT process. This study highlighted the importance of physician relational communication and the need for ongoing education of participants in CCT, meeting the different information needs of patients with different health literacy levels. These findings will inform training and educational interventions for patients, family members, and clinical and research teams. Provision of ethical advice on the clinical quality of the CCT at hand is essential, as well as informing patients of the process of approving CCT and protection. Given the stress typical for the time of signing a consent, plain language information should be provided to patients and families for future use.

Keywords: Cancer clinical trials, patient-provider communication, minority recruitment