Promoting genetic counseling among African American women with hereditary risk for breast cancer.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e13639-e13639
Author(s):  
Pooja Parekh ◽  
Vida Henderson ◽  
Kent Hoskins ◽  
LeChaun Kendall ◽  
Jessica Madrigal ◽  
...  

e13639 Background: Breast cancer (BC) mortality is substantially higher for African American (AA) women compared to their white counterparts. Genetic counseling (GC) is a key step in management of women with hereditary BC risk, but medically underserved women of color are less likely to receive these services. We report preliminary data from a pilot study examining the impact of a culturally sensitive, multimedia educational video created to motivate AA women with hereditary BC risk to attend GC. Development of the intervention was guided by the Integrative Model of Behavioral Prediction and qualitative research with the target audience. Methods: AA women eligible for GC for hereditary BC according to national criteria were identified through cancer genetic risk assessment (CGRA) performed at the time of a screening mammogram at the University of Illinois Health System in Chicago, IL, and were invited to participate in the study. Participants completed a baseline survey, viewed the educational intervention, and completed a post-intervention survey. The surveys included five-item Likert scales on intentions to act on the information presented, normative beliefs about GC, knowledge, and acceptability of the intervention. Responses were summarized as frequencies and proportions, and changes pre/post-intervention were evaluated using McNemar’s test. Results: The proportion of participants (n = 30) who rated they were “Extremely Likely” to make an appointment with a genetic counselor increased from 50% at baseline to 70% following the intervention (p = 0.04). After viewing the video, the proportion who rated they were “Extremely Likely” to speak with their doctor about genetic counseling increased from 60% to 77% (p = 0.10). There was a 16.6% increase (p = 0.05) in the proportion of women who indicated their family would be interested in learning more about GC, and 96.6% and 90% of participants agreed that the intervention video was enjoyable to watch and that they could relate to what the actors were saying, respectively. Changes in intentions to act on the information presented were not accompanied by changes in knowledge. Conclusions: A culturally sensitive multimedia intervention based on a theoretical model of health behavior increased intentions to attend GC among high risk AA women. The intervention was enjoyable for minority women to watch and increased intentions to discuss GC with family members. These findings indicate that culturally tailored motivational interventions have the potential to increase uptake of GC in underserved communities.

2003 ◽  
Vol 12 (8) ◽  
pp. 779-787 ◽  
Author(s):  
Delia Smith West ◽  
Paul G. Greene ◽  
Polly P. Kratt ◽  
Leavonne Pulley ◽  
Heidi L. Weiss ◽  
...  

2012 ◽  
Vol 30 (27_suppl) ◽  
pp. 69-69
Author(s):  
Lori Uyeno ◽  
Carolyn E. Behrendt ◽  
Laura Kruper ◽  
Steven L. Chen ◽  
Courtney Vito

69 Background: Contralateral breast cancer (CBC) is the most common malignancy among breast cancer survivors. We investigated the impact of CBC on overall survival (OS) after unilateral primary breast cancer (UPBC) in women treated with mastectomy. Methods: Using the Surveillance Epidemiology End Results registry, we identified women age 25-80 diagnosed 1998-2006 with UPBC stage 0-III, treated with mastectomy and free of CBC at 1-year landmark. Subjects were split into test and validation samples. Follow-up continued until the earliest occurrence: death, end of 2008, or age 85. Primary risk factor was incident CBC, a time-dependent variable categorized as advanced-stage (IIB-IV), early-stage (0-IIA), or none. Proportional hazards regression adjusted for primary tumor characteristics, treatment including contralateral prophylactic mastectomy (CPM), demographics, and aging. Results: Subjects (n= 109,411, age 53.7[+12.7] years at UPBC diagnosis) were followed median 51 months. Most UPBC were early stage (63%), moderately/poorly differentiated (78%), ER+PR+ (52%). Few (9.8%) women underwent CPM at primary diagnosis. Incident CBC (n=867, 0.79%) was diagnosed median 23.5 (95% CI 1.2-72) months beyond the 1-year landmark. Test and validation samples did not differ. Only CBC of stage IIB-IV increased mortality; early stage CBC had no effect on OS. Among CBC cases, advanced stage was independently associated with aggressive UPBC (more positive nodes; larger tumor; greater extension), African-American race, and shorter time from UPBC. Conclusions: Among women who undergo mastectomy +/-CPM for UPBC, few develop CBC, which impacts survival only when diagnosed at advanced stage. Efforts to improve survival after UPBC should emphasize earlier detection and prevention of advanced-stage CBC, especially in African-American women and women with more aggressive UPBC. [Table: see text]


Author(s):  
Shirley Spencer ◽  
Carolyn Rodgers ◽  
Vickii Coffey

African American women are disproportionately impacted by breast cancer and its associated effects. They have the highest breast cancer mortality rate of all racial and ethnic groups in the U.S., yet, many high risk African American women do not follow-up with genetic testing despite, having a shorter survival rate and more likely to develop malignancies or aggressive forms of breast cancer than white women. Purpose: This review explored breast cancer genetic follow up and barriers among African American women and made recommendations for designing tailored high risk breast cancer programs. Method: The Integrative Model of Behavioral Prediction framework provided the framework for the review. PubMed, PSYINFO, CINAHL and Cochrane Collection Plus databases were searched for articles published from 2007 to 2017 that focused on attitude and beliefs that influenced genetic testing follow up among African American women. Three reviewers independently reviewed and appraised articles. The quality of the articles was assessed to determine the evidence level and overall recommendations using the Joanna Bridge Institute grading criteria. Results: Sixteen of the 2275 articles reviewed met the inclusion criteria of which, seven showed statistically significance changes related to family concerns, medical mistrust and cost barriers; decreases in breast cancer worry and perceived risk after genetic counseling; and higher education level and diagnosed early increased genetic testing. Conclusions: This systematic review provides greater understanding of how the social determinants of health influence decisions about genetic testing and treatment to determine why African American women who are at risk for breast cancer, do not progress to genetic testing. It provided recommendations for designing sensitive curriculum content for African American women and providers to increase genetic follow-up and reduce breast cancer disparity. The results of this review could be used to design comprehensive, tailored interventions to address the identified barriers, increase breast cancer awareness and early detection, and help minority women make informed, value decisions about genetic testing and treatment options. Recommendations: Future research is required to examine the role communities, agencies and policy makers play in improving clinical outcomes for minorities.


2021 ◽  
Author(s):  
Vida Henderson ◽  
Jessica Madrigal ◽  
Le’Chaun Kendall ◽  
Pooja Parekh ◽  
Jennifer Newsome ◽  
...  

Abstract Background Despite the benefits of genetic counseling (GC) and testing, uptake of cancer genetic services is generally low and African American (AA) women are substantially less likely to receive genetic services than non-Hispanic White women. Our team developed a culturally sensitive, narrative decision aid video to promote uptake of GC among AA women at risk for a hereditary breast cancer syndrome. We report here a pilot study to demonstrate feasibility and acceptability of incorporating this intervention in conjunction with population-based cancer risk assessment in a clinical setting with medically underserved AA women. Methods AA women recommended for GC based on cancer genetic risk assessment performed in a mammography center were recruited at the time of the mammogram. A prospective, pre-post survey study design, guided by theoretical constructs, was used to evaluate baseline and immediate post-intervention psychosocial factors, including intention to participate in GC and intervention satisfaction. Results Pilot recruitment goals were met (n=30). Pre-intervention, 50% of participants indicated that they were extremely likely to make a GC appointment, compared with 70% post-intervention (p=0.0001). After watching the intervention, 50% of participants indicated that the video changed their mind regarding GC. Conclusions This study demonstrated cultural acceptability of a decision aid intervention designed to motivate AA women with hereditary breast cancer risk to attend a GC appointment. Our study showed that intention may be a specific and key construct to target in interventions designed to support decision-making about genetic services. Study results informed the design of a subsequent large scale, randomized implementation study.


2020 ◽  
Author(s):  
Sara Belle Donevant ◽  
Sue P Heiney ◽  
Cassandra Wineglass ◽  
Benjamin Schooley ◽  
Akanksha Singh ◽  
...  

BACKGROUND Although the incidence of breast cancer is lower in African American women than white women, they have decreased survival rate. This problem may be due to poor adherence to endocrine therapy which decreases the likelihood of recurrence. Accessible and culturally sensitive interventions to improve survival may decrease mortality. OBJECTIVE The purpose of this article is to describe the process of obtaining qualitative and quantitative data to guide the development of the proposed mHealth app, STORY+. METHODS We recruited 20 African American women with breast cancer. We used quantitative data collection and qualitative interviewing to collect data about their experiences with managing endocrine therapy and its side effects, understanding the value and purpose of endocrine therapy, and using technology in the breast cancer journey. RESULTS We found the women only had general knowledge of the purpose of endocrine therapy but were committed to adherence due to their health care provider’s recommendation. These women used their smartphones far more than a computer. The smartphone provided social connection, information, and practical ways to adhere to treatment. Most participants want a culturally sensitive app to assist them with adherence and connect them with other women that were diagnosed with breast cancer and were African American, not white. CONCLUSIONS Further research is needed to develop a culturally sensitive app for African American women with breast cancer to improve adherence to endocrine therapy. Our work strongly suggests this population would use the app to connect with other African American breast cancer survivors and manage endocrine therapy including side effects.


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