Increasing Hispanic participation in cancer clinical trials: The role of linguistic capacity and patient/provider focus group results

B61

Substantial research documents that minorities are underrepresented in clinical trials. However, much of the research on understanding the factors responsible for the underrepresentation of minorities has focused on African-Americans and comparatively little research has been conducted on barriers to Hispanic participation in clinical trials. Among Hispanics, the importance of language barriers in receiving appropriate health care has been documented. This Redes En Acción and Arizona Biomedical Research Commission funded research project was conducted in order to: i) describe the linguistic factors that impact enrollment into gynecologic cancer prevention trials for Hispanic women; ii) describe the beliefs of Hispanic women regarding participation in gynecologic cancer prevention trials; and iii) collect Arizona specific data about barriers and facilitators encountered by Hispanic patients and community physicians in referral and recruitment to cancer clinical trials. The quantitative aspect of this project involved implementing a 20-item questionnaire among subjects (n=190) measuring their preferences for documentation/time/staff, language preferences, and other demographic information. The qualitative aspect of this project involved conducting a series of focus groups with Hispanic patients and AHCCCS providers to obtain qualitative data about barriers and facilitators to patient participation and provider referral and recruitment of patients to clinical trials. Separate interview guides were developed for patient groups, providers that do not refer or recruit patients, and providers that do refer or recruit patients. The results showed that when comparing Hispanics to non-Hispanics, the proportion of Hispanic subjects indicating that the availability of consent forms and materials in Spanish was very important for their participation in clinical research (20%) significantly differed from non-Hispanics (1%, p<0.001). Also, the proportion of Hispanic subjects indicating that verbal descriptions were a very important factor for their participation (49%) significantly differed from non-Hispanics (22%, p<0.001). Additionally, the proportion of Hispanic subjects indicating that study personnel was a very important factor for their participation (34%) significantly differed from non-Hispanics (11%, p=0.001). Among Hispanics, 70% reported that it was very important to have study personnel who spoke the same language as they did. Preliminary results from focus group data indicated that patient themes addressed issues such as distrust/fear of experimentation, financial concerns, family support, access to care, access to information, time constraints, and language concerns. Non-referring physician themes included trust/conflict of interest, lack of patient awareness, lack of time and staff resources, and communication with patients. Referring physician themes included importance of education, patient motivation, language concerns, and differing reasons for referring patients to clinical trials. Linguistic capacity, proficiency, and communication between patients, providers, and study staff are important factors to address in order to increase Hispanic participation in cancer clinical trials.