Satisfaction and perceptions of research participants in clinical and translational studies: An urban multi-institution with CTSA.

PURPOSE: To examine research participants' levels of satisfaction and perceptions and aid researchers to better engage research volunteers from all racial and ethnic populations in clinical trials. A participant satisfaction survey was developed that focused on three domains to reflect satisfaction with delivery of care, environment, and center operations. In addition, the survey contained open-ended questions to reflect overall experiences and perceptions. Two hundred and seventy-eight participants (55% African American and 29% non-Hispanic Whites) with an average age of 52 years completed the survey. RESULTS: The results indicated that the majority of the participants rated their satisfaction very highly across all domains. Ninety percent stated they were very satisfied/satisfied or very strongly agreed/agreed in the three domains. Obtaining high-quality care/access to health care professionals (60%), learning more about their illness/disease (60%), and helping others (57%) were noted as important factors in choosing to participate in a trial. Regarding overall experience, majority of respondents stated that friendliness, expertise of staff, learning more about their disease, and contributing to science were important. Further, financial compensation was not a primary motivation for participation. A majority of participants stated that they would participate in future studies and would recommend a friend or a family member to participate in clinical trials. CONCLUSIONS: The findings indicate that the degree of satisfaction with the research staff and with the specific trial itself are important determinants for enrolling, completing a study, and for participating in future trials.

Attitudes and experiences regarding genetic research among persons of African descent.

Minorities are underrepresented in genetic research. This study examined the attitudes, experiences, and willingness of persons of African descent related to participation in genetic research. A total of 272 persons of African descent completed a questionnaire about attitudes and experiences associated with genetic research. Descriptive, Chi-square, and logistic regression were used to examine the impact of attitudes and experiences in predicting the odds of willingness to participate in genetic research. A majority of participants (97%) indicated that they have never participated in genetic research; however, a majority also reported that they would be willing to participate in a genetic study specifically for the detection of risk factors for cancer (87%), diabetes (89%), alcohol use disorder (73%), and Alzheimer's disease (88%). Participants who disagreed that "results from genetic research can explain why some diseases are found more often in some ethnic groups than others" were less likely to be willing to participate in studies related to cancer (OR = 0.16), diabetes (OR = .16), alcohol use disorder (OR = 0.27), and Alzheimer's disease (OR = 0.27). Participants reported limited experiences engaging in genetic research; yet, they overwhelmingly acknowledged the importance of genetic research and expressed willingness to participate in multifactorial genetic studies despite concerns about genetic discrimination, stigma, and/or a potentially poor prognosis. Further research on the underlying reasons why persons of African descent choose to participate in genetic research should be explored and addressed to make research more inclusive and ethically sound.

Culturally Competent Strategies for Recruitment and Retention of African American Populations into Clinical Trials.

PURPOSE: To identify successful recruitment strategies, challenges and best practices for researchers to engage African American communities in clinical studies taken into consideration target participants' culture and context. METHODS: We reviewed 50 studies conducted from 2001 to 2012 at an inner-city research center to determine the type, duration, anticipated enrollments and actual enrollments. Survey was sent to study coordinators to obtain data on recruitment and retention strategies, challenges and dropout rates. We also interviewed 25 study coordinators on challenges and strategies. RESULTS: Of the 50 studies, 24 had completed recruitment at the time of this report. The completed studies achieved a median recruitment rate of 88% (range: 50-110). Successful recruitment and retention strategies included: field-based strategy and snowballing. Major barriers were: distrust, compensation, education disadvantage, lack of interest, and inability to have study partner. Strategies to reduce barriers included providing informational sessions, disseminating newsletters about study outcomes. Best practices include being culturally sensitive including demonstrating a caring attitude and being responsive to participants needs. CONCLUSIONS: Cultural competence is critical in order to design and implement successful recruitment strategies in this population. Research teams should consist of multiethnic staff, involve the community, demonstrate trust and deliver concise education of the research endeavor.

Ethnic-based differences in the association of self-perceived health status and doctor's office utilization: Longitudinal Study on Aging.

BACKGROUND: The purpose of this study was to determine whether self-perceived health status is predictive of a doctor's office visit in the Longitudinal Study on Aging (LSOA). METHODS: This was a population-based longitudinal study of persons aged ≥70 years who participated in the Study on Aging in 1984 and a follow-up survey of the LSOA in 1986. The cohort for the study consisted of 560 blacks and 6880 whites who were 70 years or older in 1984. Multivariable logistic regression analysis was performed separately for blacks and for whites. RESULTS: The study sample was predominantly Caucasian (91.2%) with a mean age 76.8 ± 5.5 years and mean education grade 10 ± 3.7. The majority (82%) lived above the poverty level. Self-reported poor health status predicted the use of doctor's office services among whites (odds ratio [OR] 5.15; 95% confidence interval [CI] 3.34-7.95), but not in blacks (OR 1.6; 95% CI 0.54-4.76). CONCLUSION: Self-perceived health status predicted the use of doctor's office services among older whites but not in older blacks in the LSOA.