Formative Research to Design a Culturally-appropriate Cancer Clinical Trial Education Program to Increase Participation of African American and Latino Communities

Background: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. Methods: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. Results: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. Conclusions: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos

A Community-Driven Intervention for Prostate Cancer Screening in African Americans

The purpose of the study was to assess the impact of an educational intervention on prostate cancer screening behavior and knowledge. Participants were 104 African American men, 45 years and older, who had not been screened for prostate cancer with a prostate-specific antigen and/or digital rectal exam within the past year. All participants received an intervention delivered by trained lay community educators using a prostate cancer educational brochure developed in collaboration with the community, with structured interviews preintervention and 3 months postintervention. The main study outcomes included prostate-specific antigen screening rates during the 3-month interval and knowledge, barriers to screenings, and decisional conflict around screening. Compared with the 46 men who did not get screened, the 58 participants who got screened were more likely to have greater than a high school education, annual household incomes ≥$25,000, and a family history of non–prostate cancer (p \u3c .05). Average knowledge scores increased, and barriers to screening scores decreased, from preintervention to postintervention only for participants who had been screened (p \u3c .05). The results of this study demonstrate the feasibility and efficacy of an academic institution collaborating with the African American community to develop a successful prostate cancer educational intervention, an approach that can be expanded to other cancers and other chronic diseases

A Tailored Educational Program to Improve Cancer Clinical Trial Participation among African Americans and Latinos

Background: Participation in cancer clinical trials is low in minorities, particularly among African Americans and Latinos. Lack of awareness and knowledge regarding clinical trials are major barriers to participation. Objective: To develop a tailored, educational program to increase awareness and understanding of cancer clinical trials. Methods: We used an iterative, community engaged adaptation process to create culturally and linguistically appropriate content for African Americans and Latinos. We first identified an existing clinical trials education program and held a focus group with peer educators who previously delivered the program. Next we conducted 9 focus groups (4 with African Americans, 5 with Latino) (N=85) to obtain input on ways to improve the educational program. We then revised the program based on feedback. The community review board and the researcher reviewed the data summary and finalized the educational program. Results: The key focus group findings were used to identify and integrate content related to cancer (e.g., definition, risk factors, statistics such as top cancer deaths by race and gender), clinical trials (e.g., definition, process, participation costs, and clinical trial resources). Minor changes were also in content, length (i.e., shorter), color scheme (i.e., lighter tones), and visual aids. We also developed testimonials from the African American and Latino researcher and community member perspectives on cancer clinical trial participation. Conclusion: The tailored clinical trial educational program includes content and format deemed more appropriate and relevant to African Americans and Latinos. The new program will be delivered in community settings and compared to the untailored version to determine impact on knowledge, aware, and willingness to participate in clinical trials

Pragmatic trial of an intervention to increase human papillomavirus vaccination in safety-net clinics

Abstract Background Human papillomavirus (HPV) infection has been causally linked to six cancers, and many disproportionately affect minorties. This study reports on the development and effectiveness of an intervention aimed at increasing HPV vaccine uptake among African American and Hispanic pediatric patients in safety-net clinics. Methods Formative research, community engagement, and theory guided development of the intervention. A clustered, non-randomized controlled pragmatic trial was conducted in four clinics providing healthcare for the underserved in Tennessee, U.S., with two intervention sites and two usual care sites. Patients aged 9-18 years (N = 408) and their mothers (N = 305) enrolled, with children clustered within families. The intervention consisted of two provider/staff training sessions and provision of patient education materials, consisting of a video/flyer promoting HPV vaccine. Medical records were reviewed before/after the initial visit and after 12 months. Results At the initial visit, provision of patient education materials and provider recommendation were higher at intervention sites versus usual care sites, and receipt of HPV vaccine was higher at intervention sites (45.4% versus 32.9%) but not significantly after adjusting for patient’s age and mother’s education. Provider recommendation, but not education materials, increased the likelihood of vaccine receipt at the initial visit, although over one-third of intervention mothers cited the flyer/video as motivating vaccination. Completion of the 3-dose series at follow-up was lower in the intervention arm. Conclusions Future interventions should combine patient education, intensive provider/staff education, and patient reminders. Research should compare patient education focusing on HPV vaccine only versus all adolescent vaccines. Trial registration Retrospectively registered with ClinicalTrials.gov NCT02808832 , 9/12/1

A Community-Driven Intervention for Prostate Cancer Screening in African Americans

The purpose of the study was to assess the impact of an educational intervention on prostate cancer screening behavior and knowledge. Participants were 104 African American men, 45 years and older, who had not been screened for prostate cancer with a prostate-specific antigen and/or digital rectal exam within the past year. All participants received an intervention delivered by trained lay community educators using a prostate cancer educational brochure developed in collaboration with the community, with structured interviews preintervention and 3 months postintervention. The main study outcomes included prostate-specific antigen screening rates during the 3-month interval and knowledge, barriers to screenings, and decisional conflict around screening. Compared with the 46 men who did not get screened, the 58 participants who got screened were more likely to have greater than a high school education, annual household incomes ≥$25,000, and a family history of non-prostate cancer (p < .05). Average knowledge scores increased, and barriers to screening scores decreased, from preintervention to postintervention only for participants who had been screened (p < .05). The results of this study demonstrate the feasibility and efficacy of an academic institution collaborating with the African American community to develop a successful prostate cancer educational intervention, an approach that can be expanded to other cancers and other chronic diseases

Additional file 1: of Pragmatic trial of an intervention to increase human papillomavirus vaccination in safety-net clinics

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