Participation in Research Studies: Factors Associated with Failing to Meet Minority Recruitment Goals

Durant, Raegan W.; Davis, Roger B.; George, Diane Marie M. St.; Williams, Ishan C.; Blumenthal, Connie; Corbie-Smith, Giselle

doi:10.1016/j.annepidem.2007.02.003

Cited by 85 publications

(84 citation statements)

References 26 publications

(23 reference statements)

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“…Not only are African Americans historically underrepresented in scientific research, but due to lack of engagement in the power structure influencing discovery decisions, they are also seldom in a position to direct research focused on the problems and issues that directly impact their health (Durant et al 2007;Hughes et al 2004). Accelerating the nation's cancer disparities research agenda requires opportunities that allow target audience members to provide significant input about the science and methods as well as proposed solutions (e.g., interventions) to address disparities Minkler and Wallerstein 2012).…”

Section: Introductionmentioning

confidence: 99%

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

et al. 2014

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One barrier to searching for novel mutations in African American families with breast cancer is the challenge of effectively recruiting families-affected and non-affected relatives-into genetic research studies. Using a communitybased participatory research (CBPR) orientation, we incorporated several evidence-based approaches through an iterative fashion to recruit for a breast cancer genetic epidemiology study in African Americans. Our combined methods allowed us to successfully recruit 341 African American women (247 with breast cancer and 94 relatives without breast cancer) from 127 families. Twenty-nine percent of participants were recruited through National Witness Project (NWP) sites, 11 % came from in-person encounters by NWP members, 34 % from the Love Army of Women, 24 % from previous epidemiologic studies, and 2 % from a support group. In terms of demographics, our varied recruitment methods/sources yielded samples of African American women that differ in terms of several sociodemographic factors such as education, smoking, and BMI, as well as family size. To successfully recruit African American families into epidemiological research, investigators should include community members in the recruitment processes, be flexible in the adoption of multipronged, iterative methods, and provide clear communication strategies about the underlying benefit to potential participants. Our results enhance our understanding of potential benefits and challenges associated with various recruitment methods. We offer a template for the design of future studies and suggest that generalizability may be better achieved by using multipronged approaches.

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Section: Introductionmentioning

confidence: 99%

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

et al. 2014

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“…The sample was predominantly GOLD stage II and III (85.81%) and non-Hispanic white (91.69%). Underrepresentation of racial and ethnic minorities is an inherent problem of clinical trials (31). On the other hand, the distribution of spirometric impairment is representative of clinic samples of patients with COPD intermediate between primary care (32) and specialty care samples (33).…”

Section: Original Researchmentioning

confidence: 99%

Domain-Specific Self-Efficacy Is Associated with Measures of Functional Capacity and Quality of Life among Patients with Moderate to Severe Chronic Obstructive Pulmonary Disease

et al. 2014

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The relationship between self-efficacy and health behaviors is well established. However, little is known about the relationship between self-efficacy and health-related indicators among patients with chronic obstructive pulmonary disease (COPD).Objectives: The purpose of this cross-sectional cohort study was to test the hypothesis that the total score and specific subdomain scores of the COPD Self-Efficacy Scale (CSES) are associated with functional capacity and quality of life in a group of patients with moderate to severe COPD.Methods: Relationships were examined in a cross-sectional study of baseline data collected as part of a randomized trial. Self-efficacy was measured using the five domains of the CSES: negative affect, emotional arousal, physical exertion, weather/environment, and behavioral. Measures of quality of life and functional capacity included SF-12: physical and mental composite scores, Chronic Respiratory Questionnaire dyspnea domain, and the 6-minutewalk test. Statistical analyses included Spearman correlation and categorical analyses of self-efficacy ("confident" vs. "not confident") using general linear models adjusting for potential confounders.Measurements and Main Results: There were 325 patients enrolled with a mean age (standard deviation) of 68.5 (9.48) years, 49.5% male, and 91.69% non-Hispanic white. The negative affect, emotional arousal, and physical exertion domains were moderately correlated (range, 0.3-0.7) with the SF-12 mental composite score and Chronic Respiratory Questionnaire dyspnea domain. In models exploring each CSES domain as "confident" versus "not confident" and adjusting for age, sex, race, pack-years, and airflow obstruction severity, there were multiple clinically and statistically significant associations between the negative affect, emotional arousal, and physical exertion domains with functional capacity and quality of life. Conclusions:The aggregated total CSES score was associated with better quality of life and functional capacity. Our analysis of subdomains revealed that the physical exertion, negative affect, and emotional arousal subdomains had the largest associations with functional capacity and quality of life indicators. These findings suggest that interventions to enhance self-efficacy may improve the functional capacity and quality of life of patients with moderate to severe COPD.Keywords: COPD; dyspnea; self-efficacy; quality of life Author Contributions: B.E.J., D.B.C., J.A., K.P.S., and S.B. were involved in the conception, hypothesis generation, and design of the study. B.E.J., K.P.S., M.U., and S.B. were involved in the statistical analysis. D.B.C., R.R., and J.P. were involved in the acquisition of data and interpretation of results.Correspondence and requests for reprints should be addressed to Bradford E. Jackson, Ph.D.,

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“…245 Other data indicate that a large proportion of study principal investigators do not set a priori recruitment goals for racial-ethnic minorities, even though the number of minority participants needed for hypothesis testing may differ substantially from the numbers needed for more exploratory analyses aimed at generating new hypotheses. 244 The limitations in care among minority populations and the relative lack of resources in these communities leads these populations 236 to seek care in different settings from clinics to EDs or to never have access to medical care, making recruitment of minorities into stroke population-based studies difficult to achieve. 241 Some investigators have created challenges for themselves by blindly using approaches to recruit subjects that may have been effective among nonminority groups, such as the use of mailed surveys, individual appeals, and reliance on individuals' basic trust in healthcare providers.…”

Section: Structural Factors (Health and Research Systems And Economicmentioning

confidence: 99%

“…242 In fact, care providers, especially physicians, tend to act as gatekeepers and provide the majority of patient education and coordination regarding clinical trials. 243,244 Evaluations of medical researchers' opinions about low minority recruitment have identified a perception of lower interest in clinical trials among minority patients (due to mistrust of researchers and lack of awareness/information and resources), a lack of investigator confidence in explaining clinical trials in culturally appropriate terms as probable barriers, and the paucity of collegial relationships between university-based physicians and many community physicians caring for minority patients. 245 Other data indicate that a large proportion of study principal investigators do not set a priori recruitment goals for racial-ethnic minorities, even though the number of minority participants needed for hypothesis testing may differ substantially from the numbers needed for more exploratory analyses aimed at generating new hypotheses.…”

Section: Structural Factors (Health and Research Systems And Economicmentioning

confidence: 99%

Racial-Ethnic Disparities in Stroke Care: The American Experience

Cruz‐Flores¹,

Rabinstein²,

Biller³

et al. 2011

Stroke

428

261

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Purpose-Our goal is to describe the effect of race and ethnicity on stroke epidemiology, personal beliefs, access to care, response to treatment, and participation in clinical research. In addition, we seek to determine the state of knowledge on the main factors that may explain disparities in stroke care, with the goal of identifying gaps in knowledge to guide future research. The intended audience includes physicians, nurses, other healthcare professionals, and policy makers. Methods-Members of the writing group were appointed by the American Heart Association Stroke Council Scientific Statement Oversight Committee and represent different areas of expertise in relation to racial-ethnic disparities in stroke care. The writing group reviewed the relevant literature, with an emphasis on reports published since 1972. The statement was approved by the writing group; the statement underwent peer review, then was approved by the American Heart Association Science Advisory and Coordinating Committee. Results-There are limitations in the definitions of racial and ethnic categories currently in use. For the purpose of this statement, we used the racial categories defined by the US federal government: white, black or African American, Asian, American Indian/Alaskan Native, and Native Hawaiian/other Pacific Islander. There are 2 ethnic categories: people of Hispanic/Latino origin or not of Hispanic/Latino origin. There are differences in the distribution of the burden of risk factors, stroke incidence and prevalence, and stroke mortality among different racial and ethnic groups. In addition, there are disparities in stroke care between minority groups compared with whites. These disparities include lack of awareness of stroke symptoms and signs and lack of knowledge about the need for urgent treatment and the causal role of risk factors. There are also differences in attitudes, beliefs, and compliance among minorities compared with whites. Differences in socioeconomic status and insurance coverage, mistrust of the healthcare system, the relatively limitedThe findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.The American Heart Association makes every effort to avoid any actual or potential conflicts of interest that may arise as a result of an outside relationship or a personal, professional, or business interest of a member of the writing panel. Specifically, all members of the writing group are required to complete and submit a Disclosure Questionnaire showing all such relationships that might be perceived as real or potential conflicts of interest.This statement was approved by the American Heart Association Science Advisory and Coordinating Committee on April 6, 2011. A copy of the document is available at http://my.americanheart.org/statements by selecting either the "By Topic" link or the "By Publication Date" link. To purchase additional reprints, call 843-216-2533 or e-mail kelle.ramsay@woltersklu...

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Participation in Research Studies: Factors Associated with Failing to Meet Minority Recruitment Goals

Abstract: Investigators often do not set recruitment goals for some racial/ethnic groups. Factors associated with failure to meet recruitment goals vary in the recruitment of different minority groups.

Cited by 85 publications

References 26 publications

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

Domain-Specific Self-Efficacy Is Associated with Measures of Functional Capacity and Quality of Life among Patients with Moderate to Severe Chronic Obstructive Pulmonary Disease

Racial-Ethnic Disparities in Stroke Care: The American Experience

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