Giselle Corbie-Smith

Attitudes and Beliefs of African Americans Toward Participation in Medical Research

OBJECTIVE: To describe barriers to participation of African Americans in research.DESIGN: Focus group interviews conducted in 1997.PATIENTS: Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups.MEASUREMENTS AND MAIN RESULTS: African-American patients’ attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research.CONCLUSIONS: African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.

Influence of Usual Source of Care on Differences by Race/Ethnicity in Receipt of Preventive Services

AbstractOBJECTIVE: We examined the relation between race/ethnicity and receipt of preventive services and the effect of having a usual source of care (USOC) on receipt of preventive services in different racial and ethnic groups. DESIGN/PARTICIPANTS: We analyzed data from adults, aged 18 to 64 years in the Household Component of the 1996 Medical Expenditure Panel Survey, a nationally representative survey of health care use for the United States. MEASUREMENTS: The proportion of adults who received age-appropriate preventive services. RESULTS: Compared to white respondents, Hispanics were less likely to receive breast exams and blood pressure and cholesterol screening than were white respondents, and blacks were more likely to report receiving a Pap smear. Despite being less likely to report having a USOC, black and Hispanic women were as likely or more likely to report receiving breast and cervical cancer screening, after controlling for having a USOC and other factors. Hispanics reported receiving blood pressure screening less often, and blacks reported receiving more cholesterol screening. For each race/ethnicity group, having a USOC was associated with receiving preventive services. However, controlling for USOC and other confounders attenuated, but did not eliminate, differences by race/ethnicity. CONCLUSION: The differences by race in receipt of preventive services suggest the need for different starting points for devising strategies to address racial differences in disease outcomes. While having a USOC will be important in narrowing the differences by race in receipt of preventive services, attending to other factors that contribute to disparities in health will also be essential.

Factors Associated With Decisions to Undergo Surgery Among Patients With Newly Diagnosed Early-Stage Lung Cancer

CONTEXT Lung cancer is the leading cause of cancer death in the United States. Surgical resection for stage I or II non-small cell cancer remains the only reliable treatment for cure. Patients who do not undergo surgery have a median survival of less than 1 year. Despite the survival disadvantage, many patients with early-stage disease do not receive surgical care and rates are even lower for black patients. OBJECTIVES To identify potentially modifiable factors regarding surgery in patients newly diagnosed with early-stage lung cancer and to explore why blacks undergo surgery less often than whites. DESIGN, SETTING, AND PATIENTS Prospective cohort study with patients identified by pulmonary, oncology, thoracic surgery, and generalist practices in 5 communities through study referral or computerized tomography review protocol. A total of 437 patients with biopsy-proven or probable early-stage lung cancer were enrolled between December 2005 and December 2008. Before establishment of treatment plans, patients were administered a survey including questions about trust, patient-physician communication, attitudes toward cancer, and functional status. Information about comorbid illnesses was obtained through chart audits. MAIN OUTCOME MEASURE Lung cancer surgery within 4 months of diagnosis. RESULTS A total of 386 patients met full eligibility criteria for lung resection surgery. The median age was 66 years (range, 26-90 years) and 29% of patients were black. The surgical rate was 66% for white patients (n = 179/273) compared with 55% for black patients (n = 62/113; P = .05). Negative perceptions of patient-physician communication manifested by a 5-point decrement on a 25-point communication scale (odds ratio [OR], 0.42; 95% confidence interval [CI], 0.32-0.74) and negative perception of 1-year prognosis postsurgery (OR, 0.27; 95% CI, 0.14-0.50; absolute risk, 34%) were associated with decisions against surgery. Surgical rates for blacks were particularly low when they had 2 or more comorbid illnesses (13% vs 62% for <2 comorbidities; OR, 0.04 [95% CI, 0.01-0.25]; absolute risk, 49%) and when blacks lacked a regular source of care (42% with no regular care vs 57% with regular care; OR, 0.20 [95% CI, 0.10-0.43]; absolute risk, 15%). CONCLUSIONS A decision not to undergo surgery by patients with newly diagnosed lung cancer was independently associated with perceptions of communication and prognosis, older age, multiple comorbidities, and black race. Interventions to optimize surgery should consider these factors.

Research expectations among African American church leaders in the PRAISE! project: A randomized trial guided by community-based participatory research

OBJECTIVES This study sought to examine the expectations and satisfaction of pastors and lay leaders regarding a research partnership in a randomized trial guided by community-based participatory research (CBPR) methods. METHODS Telephone and self-administered print surveys were administered to 78 pastors and lay leaders. In-depth interviews were conducted with 4 pastors after study completion. RESULTS The combined survey response rate was 65%. Research expectations included honest and frequent communication, sensitivity to the church environment, interaction as partners, and results provided to the churches. Satisfaction with the research partnership was high, but so was concern about the need for all research teams to establish trust with church partners. CONCLUSIONS Pastors and lay leaders have high expectations regarding university obligations in research partnerships. An intervention study based on CBPR methods was able to meet most of these expectations.

The Continuing Legacy of the Tuskegee Syphilis Study: Considerations for Clinical Investigation

The Tuskegee Study, an observational study of over 400 sharecroppers with untreated syphilis, was conducted by the U.S. Public Health Service to document the course of the disease in blacks, and racial differences in the clinical manifestations of syphilis. The men were not told they had syphilis, not given counseling on avoiding spread of the disease, and not given treatment throughout the course of the study. The study became the longest (1932-1972) nontherapeutic experiment on humans in the history of medicine, and has come to represent not only the exploitation of blacks in medical history, but the potential for exploitation of any population that may be vulnerable because of race, ethnicity, gender, disability, age or social class. It is important for physicians who will be caring for an increasingly diverse nation to understand the lasting implications of this study for their patients, but the effects of the Tuskegee Syphilis Study are demonstrated most strikingly by unsuccessful attempts at improving representation of minority patients in clinical trials.

Older women and HIV: how much do they know and where are they getting their information?

Objectives: To assess older urban womens knowledge about sexual transmission of human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) and to evaluate the relationship between their HIV/AIDS knowledge level and sources of information.

Trust, Benefit, Satisfaction, and Burden: A Randomized Controlled Trial to Reduce Cancer Risk Through African- American Churches

BACKGROUND: Community-based participatory research (CBPR) approaches that actively engage communities in a study are assumed to lead to relevant findings, trusting relationships, and greater satisfaction with the research process.OBJECTIVE: To examine community members’ perceptions of trust, benefit, satisfaction, and burden associated with their participation.DESIGN, SETTING, AND PARTICIPANTS: A randomized controlled trial tested a cancer prevention intervention in members of African-American churches. Data were collected at baseline and 1-year follow-up.MEASUREMENTS: Subscales measured perception of trust in the research project and the project team, benefit from involvement with the project, satisfaction with the project and the team, and perception of burden associated with participation.MAIN RESULTS: Overall, we found high levels of trust, perceived benefit, and satisfaction, and low perceived burden among community members in Partnership to Reach African Americans to Increase Smart Eating. In bivariate analyses, participants in the intervention group reported more perceived benefit and trust (P<.05). Participants in smaller churches reported more benefit, satisfaction and trust, while participants from churches without recent health activities perceived greater benefit, greater satisfaction, and lower burden with the project and the team (P<.05). Participants whose pastors had less educational attainment noted higher benefit and satisfaction; those whose pastors were making personal lifestyle changes noted higher benefit and satisfaction, but also reported higher burden (P<.05).CONCLUSIONS: A randomized clinical trial designed with a CBPR approach was associated with high levels of trust and a perceived benefit of satisfaction with the research process. Understanding variations in responses to a research partnership will be helpful in guiding the design and implementation of future CBPR efforts.

Masculinity, Medical Mistrust, and Preventive Health Services Delays Among Community-Dwelling African-American Men

The contribution of masculinity to men’s healthcare use has gained increased public health interest; however, few studies have examined this association among African-American men, who delay healthcare more often, define masculinity differently, and report higher levels of medical mistrust than non-Hispanic White men. To examine associations between traditional masculinity norms, medical mistrust, and preventive health services delays. A cross-sectional analysis using data from 610 African-American men age 20 and older recruited primarily from barbershops in the North, South, Midwest, and West regions of the U.S. (2003-2009). Independent variables were endorsement of traditional masculinity norms around self-reliance, salience of traditional masculinity norms, and medical mistrust. Dependent variables were self-reported delays in three preventive health services: routine check-ups, blood pressure screenings, and cholesterol screenings. We controlled for socio-demography, healthcare access, and health status. After final adjustment, men with a greater endorsement of traditional masculinity norms around self-reliance (OR: 0.77; 95% CI: 0.60–0.98) were significantly less likely to delay blood pressure screening. This relationship became non-significant when a longer BP screening delay interval was used. Higher levels of traditional masculinity identity salience were associated with a decreased likelihood of delaying cholesterol screening (OR: 0.62; 95% CI: 0.45–0.86). African-American men with higher medical mistrust were significantly more likely to delay routine check-ups (OR: 2.64; 95% CI: 1.34–5.20), blood pressure (OR: 3.03; 95% CI: 1.45–6.32), and cholesterol screenings (OR: 2.09; 95% CI: 1.03–4.23). Contrary to previous research, higher traditional masculinity is associated with decreased delays in African-American men’s blood pressure and cholesterol screening. Routine check-up delays are more attributable to medical mistrust. Building on African-American men’s potential to frame preventive services utilization as a demonstration, as opposed to, denial of masculinity and implementing policies to reduce biases in healthcare delivery that increase mistrust, may be viable strategies to eliminate disparities in African-American male healthcare utilization.BACKGROUNDThe contribution of masculinity to men’s healthcare use has gained increased public health interest; however, few studies have examined this association among African-American men, who delay healthcare more often, define masculinity differently, and report higher levels of medical mistrust than non-Hispanic White men.OBJECTIVETo examine associations between traditional masculinity norms, medical mistrust, and preventive health services delays.DESIGN AND PARTICIPANTSA cross-sectional analysis using data from 610 African-American men age 20 and older recruited primarily from barbershops in the North, South, Midwest, and West regions of the U.S. (2003-2009).MEASUREMENTSIndependent variables were endorsement of traditional masculinity norms around self-reliance, salience of traditional masculinity norms, and medical mistrust. Dependent variables were self-reported delays in three preventive health services: routine check-ups, blood pressure screenings, and cholesterol screenings. We controlled for socio-demography, healthcare access, and health status.RESULTSAfter final adjustment, men with a greater endorsement of traditional masculinity norms around self-reliance (OR: 0.77; 95% CI: 0.60–0.98) were significantly less likely to delay blood pressure screening. This relationship became non-significant when a longer BP screening delay interval was used. Higher levels of traditional masculinity identity salience were associated with a decreased likelihood of delaying cholesterol screening (OR: 0.62; 95% CI: 0.45–0.86). African-American men with higher medical mistrust were significantly more likely to delay routine check-ups (OR: 2.64; 95% CI: 1.34–5.20), blood pressure (OR: 3.03; 95% CI: 1.45–6.32), and cholesterol screenings (OR: 2.09; 95% CI: 1.03–4.23).CONCLUSIONSContrary to previous research, higher traditional masculinity is associated with decreased delays in African-American men’s blood pressure and cholesterol screening. Routine check-up delays are more attributable to medical mistrust. Building on African-American men’s potential to frame preventive services utilization as a demonstration, as opposed to, denial of masculinity and implementing policies to reduce biases in healthcare delivery that increase mistrust, may be viable strategies to eliminate disparities in African-American male healthcare utilization.

Adequacy of reporting race/ethnicity in clinical trials in areas of health disparities

Although federal initiatives have mandated broader inclusion of minorities in clinical research on diseases that have disparities in health by race and ethnicity, it is not clear whether these initiatives have affected reporting of trial results. The objective of this study was to examine the reporting of race/ethnicity in clinical trials reports in areas of known disparities in health (i.e., diabetes, cardiovascular disease, HIV/AIDS, and cancer) and to determine what factors were associated with reporting of race/ethnicity in results. We performed a Medline search covering the period January 1989 to Oct 2000 to identify clinical trials of diabetes, cardiovascular disease, HIV/AIDS, and cancer published in the Annals of Internal Medicine, JAMA, and New England Journal of Medicine. The main outcome measure was the reporting of participation and of results by race/ethnicity of trial participants. Of 253 eligible trials, 40% (n=102) were non race-focused yet did not report race, while 2% (n=4) were non gender-focused and did not report gender. Forty-six percent of trials that reported the race/ethnicity of the sample reported only one or two racial/ethnic categories, and in 43% of these trials the total number of individuals reported in each race/ethnicity category did not equal the total reported sample size. Analysis of results by race/ethnicity was reported in only two trials, and by gender in only three trials. In diseases with known racial and ethnic disparities, many clinical trials do not report the race/ethnicity of the study participants, and almost none report analyses by race/ethnicity. Although federal initiatives mandate inclusion of minority groups in research, that inclusion has not translated to reporting of results that might guide therapeutic decisions.

Influence of race, clinical, and other socio-demographic features on trial participation☆

We assessed whether sociodemographic and clinical characteristics were determinants of clinical trial participation in the Womens Estrogen for Stroke Trial (WEST) by examining data collected on women with a WEST consent visit completed after June 1996. We found no differences in consent rates by education or ethnic group (32% of white women compared with 34% of black women). Conditions associated with the intervention, such as a history of hysterectomy or previous estrogen replacement use, were strongly associated with a womans decision to participate in this clinical trial. In multivariate models, features independently associated with consent to participate were age (odds ratio [OR] 0.96, 95% confidence interval [CI] 0.94-0.97), hysterectomy (OR 1.78, 95% CI 1.27-2.50), no cognitive impairment (OR 1.70, 95% CI 1.10-2.63), history of volunteerism (OR 1.62, 95% CI 1.02-2.63), and previous estrogen use (RR 1.58, 95% CI 1.08-2.30).