Recruiting African American Women to Participate in Hereditary Breast Cancer Research

Halbert, Chanita Hughes; Brewster, Kiyona; Collier, Aliya; Smith, Cara Lea; Kessler, Lisa; Weathers, Benita; Stopfer, Jill E.; Domchek, Susan M.; Wileyto, E. Paul

doi:10.1200/jco.2004.00.4952

Cited by 46 publications

(80 citation statements)

References 21 publications

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“…Women who were eligible for study participation were mailed an invitation letter; those who did not opt out of study participation were contacted for study enrollment that included completion of a structured baseline telephone interview. Sixtytwo percent of all eligible women contacted enrolled in the study and completed the baseline telephone interview (28). There were no differences in study enrollment among women with and without a personal history of cancer.…”

Section: Methodsmentioning

confidence: 99%

“…However, neither genetic counseling nor clinical genetic testing for BRCA1/2 mutations was provided to women as part of the epidemiologic study. Moreover, referral from the epidemiologic study was not associated with decisions about study enrollment (28). Women who were interested in learning more about genetic counseling completed a referral form that obtained information on race, personal and family history of breast and ovarian cancer, mailing address, and telephone number.…”

Section: Methodsmentioning

confidence: 99%

“…Our study recruitment procedures have been described in detail elsewhere (28) and are summarized here. Briefly, women were recruited to participate in the study through a clinical and community-based referral network that included health care facilities and community oncology resources (e.g., breast cancer support groups and health fairs) in the metropolitan Philadelphia area.…”

Section: Methodsmentioning

confidence: 99%

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

Brewster¹,

Wileyto²,

Kessler³

et al. 2007

Cancer Epidemiology, Biomarkers &Amp; Prevention

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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 z10% 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)

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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

Brewster¹,

Wileyto²,

Kessler³

et al. 2007

Cancer Epidemiology, Biomarkers &Amp; Prevention

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“…Methods shown to increase uptake of clinical and research-based genetic testing include referrals through the oncology care setting (Halbert et al 2005). However, a limitation of these methods is their inability to define a study denominator, which is of critical importance in the estimation of disease prevalence in epidemiologic studies.…”

Section: Introductionmentioning

confidence: 99%

Updating and refining a study brochure for a cancer registry-based study of BRCA mutations among young African American breast cancer patients: lessons learned

Vadaparampil

Pal

2010

J Community Genet

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The aim of the present study was to update, refine, and evaluate a study brochure to promote participation in a population-based study of BRCA mutations among AA women with a personal history of early-onset breast cancer. A multi-step approach was used to develop this brochure and included: (1) feedback from community members (through a Community Advisory Panel (CAP)) to develop and refine the study brochure, (2) pilot testing of materials with the target audience, and (3) review of pilot testing results with the CAP. Based on the feedback received at each step, the study brochure was refined. In phase 1, the major changes included emphasizing the concept of leaving a legacy and family, using the terms Black and women of color, and use of patient vignettes and photos. In phase 2, attraction and cultural acceptability were identified as two areas for improvement in the study brochure. These results demonstrate that involvement of community members and target study population in the development of a study-specific brochure can provide invaluable feedback to optimize recruitment strategies. This approach can be readily adapted to develop study recruitment materials for individuals from a variety of cultural and ethnic backgrounds.

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“…[37][38][39][40][41][42] Despite this attention, only a few studies provide data about the challenges and impact of expanding ethnic diversity in research about genetic susceptibility testing. 43,44 In providing risk assessment to a more diverse study population, we were faced with the dilemma of whether and how to incorporate ethnic group status in risk disclosure procedures. On one hand, many concerns have been raised about linking ethnicity, genetics, and health.…”

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confidence: 99%

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Christensen

Roberts

Royal

et al. 2008

Genetics in Medicine

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Purpose: To describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants. Methods: The following informed our decision whether to stratify risk assessment by ethnicity: evaluation of epidemiological data, appraisal of benefits and risks of incorporating ethnicity into calculations, and feasibility of creating ethnicityspecific risk curves. Once the decision was made, risk curves were created based on data from a large, diverse study of first-degree relatives of patients with Alzheimer disease. Results: Review of epidemiological data suggested notable differences in risk between African Americans and whites and that Apolipoprotein E genotype predicts risk in both groups. Discussions about the benefits and risks of stratified risk assessments reached consensus that estimates based on data from whites should not preclude enrolling African Americans, but population-specific risk curves should be created if feasible. Risk models specific to ethnicity, gender, and Apolipoprotein E genotype were subsequently developed for the randomized clinical trial that oversampled African Researchers are identifying a growing number of genetic markers that are associated with increased or decreased risk for common, complex diseases. Consequently, the development of genetic risk assessment and risk communication strategies are areas of critical importance, especially given that laypersons often have a difficult time in understanding probabilistic information. 1,2 Protocols for disclosing genetic information have been developed and refined for various forms of cancer, 3-6 but similar efforts have been made only recently for other diseases. 7,8 One area of recent focus is Alzheimer disease (AD).AD is the most common form of dementia among the elderly, affecting an estimated five million individuals in the United States. Well over 10 million Americans are expected to have the condition by 2050 as the population continues to age. 9 Many risk factors are well-characterized, including age and family history, 10 -14 whereas many others are under investigation, including education level, 15,16 head trauma, 17,18 high blood pressure, 19 caloric intake, and high cholesterol. 20,21 Regarding genetic factors, rare mutations on genes coding for amyloid precursor protein, presenilin 1, and presenilin 2 have been identified that are deterministic for early-onset AD. 22 Apolipoprotein E (APOE), in contrast, affects susceptibility to AD and has three major forms. APOE ⑀3, the most common allele, is found in over half the US population. The ⑀4 allele is associated with increased risk for AD whereas the ⑀2 allele has a protective effect. 23,24 The ⑀4 allele is neither necessary nor sufficient for AD though, and individuals with the ⑀2 allele still have risk for AD. APOE variants are also associated with other conditions such as hyperlipoproteinemia and atherosclerosis 25 and may play a role in the development of ma...

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Recruiting African American Women to Participate in Hereditary Breast Cancer Research

Cited by 46 publications

References 21 publications

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

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

Updating and refining a study brochure for a cancer registry-based study of BRCA mutations among young African American breast cancer patients: lessons learned

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

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