Aliya Collier

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.

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.

Recruiting African American Women to Participate in Hereditary Breast Cancer Research

PURPOSE This study evaluated the process of recruiting African American women to participate in genetic counseling research for BRCA1 and BRCA2 (BRCA1/2) mutations with respect to referral, study enrollment, and participation in genetic counseling. PATIENTS AND METHODS African American women (n = 783) were referred for study enrollment. RESULTS Of 783 referrals, 164 (21%) women were eligible for enrollment. Eligible women were most likely to be referred from oncology clinics (44%) and were least likely to be referred from general medical practices (11%; chi(2) = 96.80; P = .0001). Overall, 62% of eligible women enrolled onto the study and 50% of enrollees completed genetic counseling. Women with a stronger family history of cancer (odds ratio [OR] = 3.18; 95% CI, 1.36 to 7.44; P = .01) and those referred from oncology clinics and community oncology resources (OR = 2.97; 95% CI, 1.34 to 6.58; P = .01) were most likely to enroll onto the study. Referral from oncology clinics was associated significantly with participation in genetic counseling (OR = 5.46; 95% CI, 1.44 to 20.60; P = .01). CONCLUSION Despite receiving a large number of referrals, only a small subset of women were eligible for enrollment. Oncology settings were the most effective at identifying eligible African American women and general medical practices were the least effective. Factors associated with enrollment included having a stronger family history of cancer and being referred from oncology clinics and community oncology resources. Referral from oncology clinics was the only factor associated significantly with participation in genetic counseling. Education about hereditary breast cancer may be needed among primary care providers to enhance appropriate referral of African American women to genetic counseling for BRCA1/2 mutations.

Knowledge About Genetics Among African Americans

Although knowledge about genetic concepts is important for individuals to be active participants in medical technologies that use genetic science, limited information is available on knowledge about basic genetic concepts and terminology in African Americans. The purpose of this study was to evaluate knowledge about general genetic concepts and medical genetics terminology among African Americans and to identify factors having independent associations with knowledge. Participants were 109 adult African Americans enrolled in a study on attitudes about race, genetics, and smoking. The majority of respondents were knowledgeable about general genetic concepts, but were less knowledgeable about medical genetics terminology. Education was the only factor independently associated with knowledge about sporadic disorders in multivariate logistic regression analysis. Respondents with at least some college education were most likely to be knowledgeable about sporadic disorders (OR=2.70, 95% CI=1.10, 6.67, p=.03). The results of this study suggest that genetics education targeted to African Americans may need to focus on increasing understanding about technical concepts related to genetics.

Intentions to Participate in Genetics Research among African American Smokers

Although prior studies have shown that African American smokers are likely to carry some of the genetic variants associated with smoking risk, additional research with African American smokers is needed to replicate these findings. Limited information is available on interest in participating in research to identify genetic risk factors for smoking among African American smokers; therefore, the goals of the present study were to describe intentions to participate in smoking and genetics research, and to determine factors that are associated with participation intentions. Subjects were 128 African American male and female adult smokers. Sociodemographic characteristics, clinical factors, attitudes about genetic testing, and intentions to participate in genetics research were evaluated during a structured telephone interview. Overall, 58% of respondents reported that they would be very likely to participate in research to identify genetic risk factors for smoking. Greater beliefs about the benefits of participating in medical research (odds ratio, 3.17; 95% confidence interval, 1.45-6.94; P = 0.004) and fewer perceptions of the limitations and risks of genetic testing (odds ratio, 0.90; 95% confidence interval, 0.82-0.98; P = 0.01) had significant independent associations with reporting a high likelihood of participating in this type of research. Recruitment messages and protocols that address the benefits of research participation, as well as concerns about the limitations and risks of genetic testing, may enhance African American participation in research on genetics and smoking. (Cancer Epidemiol Biomarkers Prev 2006;(15)1:150–3)

Psychological functioning in African American women at an increased risk of hereditary breast and ovarian cancer

Despite attention to psychological issues during genetic counselling and testing for hereditary breast and ovarian cancer risk, limited information is available on cancer‐specific distress among African American women being targeted for participation in counselling and testing. Therefore, the purpose of this study is to examine cancer‐specific distress in African American women at an increased risk of hereditary breast and ovarian cancer and to identify factors having significant associations with distress in this population. Respondents were 141 African American women identified for participation in genetic counselling and testing for BRCA1/2 mutations. Overall, respondents reported moderate levels of cancer‐specific distress. Younger age (coefficient = 6.0, p = 0.001), being unemployed (coefficient = −5.0, p = 0.01), and having a personal history of cancer (coefficient = 5.0, p = 0.02) had significant associations with intrusion. Younger age was also associated significantly with greater avoidance (r = 6.0, p = 0.02). These results suggest that African American women aged 50 and younger, those who are unemployed and women with a personal history of breast or ovarian cancer may be the most vulnerable to experiencing elevated levels of distress during genetic counselling and testing. Greater attention to psychological issues, including concerns about cancer and cancer risks, may be needed during genetic counselling and testing for BRCA1/2 mutations with these women.

Low Rates of African American Participation in Genetic Counseling and Testing for BRCA1/2 Mutations: Racial Disparities or Just a Difference?

Low rates of genetic counseling among African American women have generated concerns about disparities; however, to the extent that women’s decisions to accept or decline counseling are consistent with their values, then lower participation may reflect preferences and not disparities. We evaluated the extent to which women were satisfied with their decision about participating in genetic counseling for BRCA1/2 mutations and identified variables that were associated significantly with satisfaction. Prospective study of decision satisfaction with 135 African American women who had a minimum 5% prior probability of having a BRCA1/2 mutation. Decision satisfaction was evaluated one month after women were offered participation in genetic counseling using a structured questionnaire. Women were satisfied with their participation decision; more than 80% reported that their decision was consistent with their family values. However, women who declined pre-test counseling had significantly lower satisfaction scores. Our findings highlight the importance ensuring that racial differences that are due to preferences and values are not misclassified as disparities in order to identify and address the root causes of disparate treatment.

Sociocultural Predictors of Breast Cancer Risk Perceptions in African American Breast Cancer Survivors

Although African American breast cancer survivors are at increased risk for developing breast cancer again, empirical data are not available on breast cancer risk perceptions in these women. This study characterized perceived risk of developing breast cancer in African American breast cancer survivors at risk for having a BRCA1 or BRCA1 (BRCA1/2) mutation and identified factors having significant independent associations with risk perceptions. Participants were 95 African American breast cancer survivors at an increased risk for having a BRCA1/2 mutation. Risk perceptions and sociodemographic, clinical, treatment, and sociocultural factors were collected during a structured telephone interview. Most women reported that they had the same or lower risk of developing breast cancer again compared with other women (53%); however, a substantial minority of women (47%) reported that they had a higher or much higher risk. Factors having significant independent associations with heightened risk perceptions included having a ≥10% prior probability of having a BRCA1/2 mutation [odds ratio (OR), 2.91; 95% confidence interval (95% CI), 1.09-7.72; P = 0.03] and more years of formal education (OR, 2.74; 95% CI, 1.02-7.36; P = 0.05). In addition, women who thought about the past a lot were three times more likely to report heightened risk perceptions compared with those who did not think about the past a lot (OR, 3.72; 95% CI, 1.45-9.57; P = 0.01). These results suggest that it may be important to ensure adequate risk comprehension among African American women as part of genetic counseling for inherited breast-ovarian cancer risk. Discussion of risk perceptions within the context of existing beliefs and values may facilitate this process. (Cancer Epidemiol Biomarkers Prev 2007;16(2):244–8)

Effect of a Decision Aid on Access to Total Knee Replacement for Black Patients With Osteoarthritis of the Knee: A Randomized Clinical Trial

Importance Black patients with advanced osteoarthritis (OA) of the knee are significantly less likely than white patients to undergo surgery. No strategies have been proved to improve access to surgery for black patients with end-stage OA of the knee. Objective To assess whether a decision aid improves access to total knee replacement (TKR) surgery for black patients with OA of the knee. Design, Setting, and Participants In a randomized clinical trial, 336 eligible participants who self-identified as black and 50 years or older with chronic and frequent knee pain, a Western Ontario McMaster Universities Osteoarthritis Index score of at least 39, and radiographic evidence of OA of the knee were recruited from December 1, 2010, to May 31, 2014, at 3 medical centers. Exclusion criteria were history of major joint replacement, terminal illness, inflammatory arthritis, prosthetic leg, cognitive impairment, lack of a telephone, or contraindications to elective replacement surgery. Data were analyzed on a per-protocol and intention-to-treat (ITT) basis. Exposure Access to a decision aid for OA of the knee, a 40-minute video that describes the risks and benefits of TKR surgery. Main Outcomes and Measures Receipt of TKR surgery within 12 months and/or a recommendation for TKR surgery from an orthopedic surgeon within 6 months after the intervention. Results Among 336 patients (101 men [30.1%]; 235 women [69.9%]; mean [SD] age, 59.1 [7.2] years) randomized to the intervention or control group, 13 of 168 controls (7.7%) and 25 of 168 intervention patients (14.9%) underwent TKR within 12 months (P = .04). These changes represent a 70% increase in the TKR rate, which increased by 86% (11 of 154 [7.1%] vs 23 of 150 [15.3%]; P = .02) in the per-protocol sample. Twenty-six controls (15.5%) and 34 intervention patients (20.2%) in the ITT analysis received a recommendation for surgery within 6 months (P = .25). The difference in the surgery recommendation rate between the controls (24 of 154 [15.6%]) and the intervention group (31 of 150 [20.7%]) in the per-protocol analysis also was not statistically significant (P = .25). Adjustment for study site yielded similar results: for receipt of TKR at 12 months, adjusted ORs were 2.10 (95% CI, 1.04-4.27) for the ITT analysis and 2.39 (95% CI, 1.12-5.10) for the per-protocol analysis; for recommendation of TKR at 6 months, 1.39 (95% CI, 0.79-2.44) and 1.41 (95% CI, 0.78-2.55). Conclusions and Relevance A decision aid increased rates of TKR among black patients. However, rates of recommendation for surgery did not differ significantly. A patient-centered counseling and educational intervention may help to address racial variations in the use of TKR for the management of end-stage OA of the knee. Trial Registration clinicaltrials.gov Identifer: NCT01851785

Retention of African American women in cancer genetics research

Although retention is a critical component of longitudinal cancer genetics research, limited empirical data are available on predictors of study retention among populations that are difficult to enroll. We evaluated predictors of retention in cancer genetics research among African American women at increased risk for having a BRCA1 and BRCA2 (BRCA1/2) mutation. Participants were African American women (n = 192) at increased risk for hereditary breast‐ovarian cancer who were enrolled in a longitudinal genetic counseling research study. Retention was evaluated separately for the 1‐ and 6‐month follow‐ups and in terms of overall retention (e.g., completion of both telephone interviews). Seventy‐three percent of women and 65% of women were retained at the 1‐ and 6‐month follow‐ups respectively; in terms of overall retention, 60% of women were retained in both follow‐up telephone interviews. Predictors of retention at 1‐month included being employed (OR = 2.47, 95% CI = 1.24, 4.93, P = 0.01) whereas predictors of overall retention included having a personal history of breast and/or ovarian cancer (OR = 2.06, 95% CI = 1.07, 3.95, P = 0.03) and having completed genetic counseling (OR = 2.63, 95% CI = 1.39, 4.98, P = 0.003). These data suggest that once enrolled in genetic counseling research, the majority of African American women will continue to participate, especially if concrete clinical services are provided.