Chanita Hughes Halbert

Differences in the Patterns of Health Care System Distrust Between Blacks and Whites

ContextAlthough health care-related distrust may contribute to racial disparities in health and health care in the US, current evidence about racial differences in distrust is often conflicting, largely limited to measures of physician trust, and rarely linked to multidimensional trust or distrust.ObjectiveTo test the hypothesis that racial differences in health care system distrust are more closely linked to values distrust than to competence distrust.DesignCross-sectional telephone survey.ParticipantsTwo hundred fifty-five individuals (144 black, 92 white) who had been treated in primary care practices or the emergency department of a large, urban Mid-Atlantic health system.Primary measuresRace, scores on the overall health care system distrust scale and on the 2 distrust subscales, values distrust and competence distrust.ResultsIn univariate analysis, overall health care system distrust scores were slightly higher among blacks than whites (25.8 vs 24.1, p = .05); however, this difference was driven by racial differences in values distrust scores (15.4 vs 13.8, p = .003) rather than in competence distrust scores (10.4 vs 10.3, p = .85). After adjustment for socioeconomic status, health/psychological status, and health care access, individuals in the top quartile of values distrust were significantly more likely to be black (odds ratio = 2.60, 95% confidence interval = 1.03–6.58), but there was no significant association between race and competence distrust.ConclusionsRacial differences in health care system distrust are complex with far greater differences seen in the domain of values distrust than in competence distrust. This framework may be useful for explaining the mixed results of studies of race and health care-related distrust to date, for the design of future studies exploring the causes of racial disparities in health and health care, and for the development and testing of novel strategies for reducing these disparities.

Barriers of and Facilitators to Physician Recommendation of Colorectal Cancer Screening

BACKGROUNDColorectal cancer screening (CRCS) has been demonstrated to be effective and is consistently recommended by clinical practice guidelines. However, only slightly over half of all Americans have ever been screened. Patients cite physician recommendation as the most important motivator of screening. This study explored the barriers of and facilitators to physician recommendation of CRCS.METHODSA 3-component qualitative study to explore the barriers of and facilitators to physician recommendation of CRCS: in-depth, semistructured interviews with 29 purposively sampled, community- and academic-based primary care physicians; chart-stimulated recall, a technique that utilizes patient charts to probe physician recall and provide context about the barriers of and facilitators to physician recommendation of CRCS during actual clinic encounters; and focus groups with 18 academic primary care physicians. Grounded theory techniques of analysis were used.RESULTSAll the participating physicians were aware of and recommended CRCS. The overwhelmingly preferred test was colonoscopy. Barriers of physician recommendation of CRCS included patient comorbidities, prior patient refusal of screening, physician forgetfulness, acute care visits, lack of time, and lack of reminder systems and test tracking systems. Facilitators to physician recommendation of CRCS included patient request, patient age 50–59, physician positive attitudes about CRCS, physician prioritization of screening, visits devoted to preventive health, reminders, and incentives.CONCLUSIONThere are multiple physician, patient, and system barriers to recommending CRCS. Thus, interventions may need to target barriers at multiple levels to successfully increase physician recommendation of CRCS.

Recruitment of minority and underserved populations in the United States: The centers for population health and health disparities experience

OBJECTIVE The recruitment of minority and underserved individuals to research studies is often problematic. The purpose of this study was to describe the recruitment experiences of projects that actively recruited minority and underserved populations as part of The Centers for Population Health and Health Disparities (CPHHD) initiative. METHODS Principal investigators and research staff from 17 research projects at eight institutions across the United States were surveyed about their recruitment experiences. Investigators reported the study purpose and design, recruitment methods employed, recruitment progress, problems or challenges to recruitment, strategies used to address these problems, and difficulties resulting from Institutional Review Board (IRB) or Health Insurance Portability and Accountability Act of 1996 (HIPAA) requirements. Additionally, information was collected about participant burden and compensation. Burden was classified on a three-level scale. Recruitment results were reported as of March 31, 2007. RESULTS Recruitment attainment ranged from 52% to 184% of the participant recruitment goals. Commonly reported recruitment problems included administrative issues, and difficulties with establishing community partnerships and contacting potential participants. Long study questionnaires, extended follow-up, and narrow eligibility criteria were also problematic. The majority of projects reported difficulties with IRB approvals, though few reported issues related to HIPAA requirements. Attempted solutions to recruitment problems varied across Centers and included using multiple recruitment sites and sources and culturally appropriate invitations to participate. Participant burden and compensation varied widely across the projects, however, accrual appeared to be inversely associated with the amount of participant burden for each project. CONCLUSION Recruitment of minority and underserved populations to clinical trials is necessary to increase study generalizbility and reduce health disparities. Our results demonstrate the importance of flexible study designs which allow adaptation to recruitment challenges. These experiences also highlight the importance of involving community members and reducing participant burden to achieve success in recruiting individuals from minority and underserved populations.

Utilization of BRCA1/BRCA2 Mutation Testing in Newly Diagnosed Breast Cancer Patients

Background: Among newly diagnosed breast cancer patients who are at risk for carrying a BRCA1 or BRCA2 mutation, knowledge of mutation status can influence local breast cancer treatment decisions. Thus, genetic testing at the time of diagnosis is increasingly considered an option for such patients. In this study, we evaluated factors associated with the decision to undergo BRCA1/BRCA2 gene testing at the time of initial breast cancer diagnosis. Methods: Participants were newly diagnosed breast cancer patients who had not yet received definitive local breast cancer treatment and who had a family history consistent with hereditary breast cancer. Participants were offered genetic counseling and BRCA1/BRCA2 testing with results in 2 to 3 weeks. Results: Of 231 patients who referred to the study, 20 (9%) declined the baseline interview, 34 (15%) completed a baseline interview but declined genetic testing, and 177 (76%) underwent BRCA1/BRCA2 testing. Physician recommendation for BRCA1/BRCA2 testing and indecision about definitive local treatment were both associated with undergoing testing. Among patients who were tested, 38 (21%) proceeded with definitive local treatment before receiving test results. Delay in the availability of test results and low levels of anxiety were associated with the decision to proceed with definitive local treatment before receiving test results. Conclusions: These results suggest that if rapid testing is available and genetic referrals are made for appropriate patients, a high proportion are likely to opt for such testing. In particular, patients who have not yet reached a decision about definitive local treatment may benefit from a genetic referral.

Prior experiences of racial discrimination and racial differences in health care system distrust.

Purpose:Factors contributing to racial differences in health care system distrust (HCSD) are currently unknown. Proposed potential contributing factors are prior experiences of racial discrimination and racial residential segregation. Methods:Random digit dialing survey of 762 African American and 1267 white adults living in 40 US metropolitan statistical areas. Measures included the Revised Health Care System Distrust scale, the Experiences of Discrimination scale, metrics of access to care, sociodemographic characteristics, and the level of racial residential segregation in the city (using the isolation index). Results:In unadjusted analyses, African Americans had higher levels of HCSD, particularly values distrust, and greater experiences of discrimination. Experience of discrimination was also strongly associated with HCSD. Adjusting for sociodemographic characteristics, health care access, and residential segregation had little effect on the association between African American race and overall HCSD or values distrust. In contrast, adjusting for experiences of racial discrimination reversed the association so that distrust was lower among African Americans than whites (odds ratio 0.53; 95% confidence interval, 0.33–0.85 for the overall measure). The Sobel test for mediation was strongly significant (P<0.001). Conclusions:Higher HCSD among African Americans is explained by a greater burden of experiences of racial discrimination than whites. Reasons for higher distrust among whites after adjusting for experiences of racial discrimination are not known. Efforts to eliminate racial discrimination and restore trust given prior discrimination are needed.

Racial Differences in Medical Mistrust among Men Diagnosed with Prostate Cancer

Mistrust of healthcare providers and systems is a significant barrier to quality healthcare. However, limited empirical data are available on perceptions of medical mistrust among individuals who are diagnosed with cancer. The objective of this study was to identify sociodemographic, clinical, and cultural determinants of mistrust among men diagnosed with prostate cancer.

Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer

Purpose: This study evaluated rates of BRCA1 and BRCA2 (BRCA1/2) test result acceptance among African American women and identified determinants of test result acceptance.Methods: Acceptance of BRCA1/2 test results was evaluated among 157 African American women at high and moderate risk for having a BRCA1/2 mutation who were offered genetic testing as part of a clinical genetic counseling research program.Results: Twenty-two percent of women received BRCA1/2 test results. Test result acceptance differed between women with ≥10% prior probability of having a BRCA1/2 mutation (34%) and those who had a 5% prior probability (8%). Among women with ≥10% prior probability, test result acceptors were most likely to be married (OR = 5.29, 95% CI = 1.82, 15.38, P = 0.002) and be less certain about their risk of developing cancer (OR = 3.18, 95% CI = 1.04, 9.80, P = 0.04).Conclusion: These results demonstrate that acceptance of BRCA1/2 test results may be limited among African American women. Being married and having less certainty about ones cancer risk may motivate acceptance of BRCA1/2 test results among African American women. It may be important to emphasize the possibility that BRCA1/2 test results may not clarify cancer risks during pre-test counseling with African American women to ensure informed decision-making about testing.

Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer

Purpose: To evaluate attitudes about the benefits, limitations, and risks of genetic testing for BRCA1 and BRCA2 (BRCA1/2) mutations and explore testing intentions in African American women at increased risk for hereditary breast cancer.Methods: Attitudes and intentions were evaluated by telephone in African American women (n = 74) at moderate and high risk for having a BRCA1/2 mutation.Results: Attitudes about the benefits of genetic testing were endorsed at a higher rate relative to limitations and risks; however, only 30% of respondents indicated that they would definitely have testing. In regression analysis, women most likely to be considering testing were those with fatalistic beliefs about cancer and those who believed they had a BRCA1/2 mutation. Women who had two or more affected relatives were also most likely to be considering testing. Women who had a personal history of cancer and those who believed they were at high risk for developing breast cancer were most likely to report greater limitations and risks. Pros scores were higher among women older than age 50 and those who were unemployed.Conclusion: Although African American women at moderate and high risk for BRCA1/2 mutations report favorable attitudes about genetic testing, interest in testing may be limited. Women affected with cancer and those who believe they are at a higher risk for developing breast cancer may be most concerned about the negative consequences of testing. Increased attention may need to be given to beliefs about genetic testing and testing motivations during genetic counseling with African American women.

Genetic testing for inherited breast cancer risk in African Americans.

As genetic testing for BRCA1 and BRCA2 (BRCA1/2) mutations is increasingly integrated into the clinical management of high-risk women, it will be important to understand barriers and motivations for genetic counseling among women from underserved minority groups to ensure equitable access to these services. Therefore, the purpose of this review was to synthesize literature on knowledge and attitudes about genetic counseling and testing for inherited breast cancer risk in African Americans. We also review studies that evaluated genetic testing intentions in this population. We conducted a search of the PubMed database to identify studies related to BRCA1/2 testing in African Americans that were published between 1995 and 2003. Overall, studies have evaluated ethnic differences in knowledge and attitudes about genetic testing or have compared African American and Caucasian women in terms of genetic testing intentions. These studies have shown that knowledge about breast cancer genetics and exposure to information about the availability of testing is low among African Americans, whereas expectations about the benefits of genetic testing are endorsed highly. However, much less is known about the psychological and behavioral impact of genetic testing for BRCA1/2 mutations in African Americans. Additional research is needed to understand barriers and motivations for participating in genetic testing for inherited cancer risk in African Americans. The lack of studies on psychological functioning, cancer surveillance, and preventive behaviors following testing is a significant void; however, for these studies to be conducted, greater access to genetic counseling and testing in African Americans will be needed.

Long-Term Reactions to Genetic Testing for BRCA1 and BRCA2 Mutations: Does Time Heal Women's Concerns?

PURPOSE Short-term reactions to BRCA1 and BRCA2 (BRCA1/2) genetic test results have been described in several reports, but the long-terms effects of testing have not been examined extensively. METHODS We conducted an observational study to characterize the long-term impact of genetic testing for BRCA1/2 mutations in 167 women who had received genetic test results at least 4 years ago. We also evaluated the relationship between genetic testing-specific reactions and breast and ovarian cancer screening to determine the behavioral significance of adverse reactions. RESULTS Seventy-four percent of women were not experiencing any distress regarding their test result, 41% were not experiencing any uncertainty, and 51% had a score for positive experiences that was suggestive of low levels of adverse reactions in terms of family support and communication. Mutation carriers (odds ratio, 3.96; 95% CI, 1.44 to 10.89; P = .01) were most likely to experience distress. Only less time since disclosure was related significantly to experiencing uncertainty (odds ratio, 0.62; 95% CI, 0.44 to 0.88; P = .008). In terms of cancer screening, 81% of women had a mammogram during the year before study enrollment, 25% had magnetic resonance imaging (MRI), 20% had a transvaginal ultrasound, and 20% had a CA-125. Experiencing distress was associated significantly with having a CA-125 (χ(2) = 3.89, P = .05), and uncertainty was associated with having an MRI (χ(2) = 8.90, P = .003). CONCLUSION Our findings show that women are not likely to experience genetic testing concerns several years after receiving BRCA1/2 test results; distress and uncertainty are not likely to have adverse effects on screening among women at risk for hereditary disease.