Cultural and Environmental Enablers and Barriers to Participation and Retention in Clinical Trials for Cancer Research.

Abstract

Background: West Virginia (WV) residents have often rejected participation in community-based cancer research studies. Nationally, 49% of eligible patients participate in clinical trials but less than 10% of patients in WV participate.

Objective: To understand issues related to recruitment and retention of patients for cancer research in Appalachian WV.

Methods: Data were obtained from 3 focus groups including: (1) 9 patients who participated in clinical cancer trials, (2) 8 cancer research nurse coordinators, and (3) 10 physicians involved in cancer research. Groups were audio-taped and transcriptions were analyzed using MAXQDA and results were verified by two co-investigators.

Results: Most enablers and barriers identified were cultural as indicated by 72% of patients; 68% nurse coordinators; and 55% physicians. Patients identified personal emotional strength as an enabler, and negative health behaviors and fears as barriers. Enablers that nurses identified were positive patient characteristics and barriers included fear of trials, randomization, and death. Physicians identified enablers as a patient's understanding of the clinical trial and motivation to help others and the inverse of these two enablers as barriers.

Conclusion: A foundation for improving recruitment and retention of participants in cancer research in Appalachia was identified. The next step will involve cancer community organizations and patients in developing a plan to enhance enablers and overcome barriers to patient recruitment in cancer studies.

Implications for practice: Cultural influences must be considered when recruiting for clinical trials. Community organizations educating the public about cancer research may be the key to enhancing patient enrollment.