People who inherit germline mutations associated with cancer risk and susceptibility have a max of 85% lifetime risk of breast cancer diagnoses; those without germline mutations have a max of 12% lifetime risk. Genetic counseling encourages those with elevated cancer risk to make decisions in regard to genetic testing and cancer prevention choices. Genetic counseling is a necessary component of cancer risk management; however, majority of the population that’s at higher risk for breast and ovarian cancer (over 90%) has not been genetically tested. Black women are less likely to participate in genetic testing than Non-Hispanic White Women. Moreover, 40% of African American women are more likely to die from breast cancer than Non-Hispanic White women. Mutations in the BRCA-1 gene are associated with increased cancer risk, and lack of genetic testing contributes to disparities in cancer mortality rates - especially in Black women. In a previous study, the research group of Dr. Vida Henderson a new faculty member in the Public Health Sciences Division explored the feasibility of implementing a population-based approach to select candidates for genetic counseling in marginalized communities. The strategy identified systemic barriers, elimination of which led to improved the rate of provider referrals, and greater access to genetic counseling. Our work was a result from the findings of our team member, Dr. Kent Hoskins, who implemented an intervention to implement cancer genetic risk assessment for breast cancer as part of primary care in a federally qualified health center. He found that only 16% of women who were referred for genetic counseling by a primary care provider actually attended. “ This prompted the need for interventions that educate and motivate women with hereditary risk for breast cancer about how genetic counseling and testing can help inform risk reducing strategies for early cancer detection and prevention” said Dr. Henderson. Previously used genetic counseling tools include telephone-based or printed materials that were not family oriented and culturally specific. Therefore, the Henderson Group developed a culturally sensitive narrative intervention to educate, motivate, and facilitate decisions about genetic counseling among Black women at risk for hereditary breast cancer syndromes. In this study, published in BMC Health Services Research, the authors reported findings from a pilot study with the narrative intervention that demonstrate changes in intention to access genetic counseling and intervention satisfaction.
The study design consisted of a pre-post survey; it was administered at baseline and after the intervention. The survey evaluated the participant’s intentions, knowledge, and beliefs about genetic counseling. The survey questions were guided by the Integrative Model of Behavioral Prediction (IMBP) theoretical constructs. IMBP is a theoretical model for health behavior, it indicates an individual’s readiness or inclination to perform the behavior. The study was conducted in a mammography center at a safety net academic medical center. After family screening and risk assessments was conducted, participant recommendations for genetic counseling were given to the subject’s PCPs. All women in the study received recommendations for genetic counseling. The sample size consisted of 30 participants. McNemar’s test for paired data was utilized for pre and post intervention responses and the McNemar’s test of marginal homogeneity was utilized for post-intervention survey items. “ Our pilot project had very promising results and we have gotten great response from community-based organizations and clinical partners who are interested in disseminating the decision aid, using it in clinical practice, and using similar tool development methodologies with other groups of focus. We will test the efficacy of the video for increasing genetic counseling attendance in a randomized clinical trial that will begin in September 2022”, said Dr. Henderson.
Before the intervention, only 50% of participants indicated that they were likely to make genetic counseling appointments. After the intervention, 63% were interested in making genetic counseling appointments within the next 6 months. Before the intervention, 70% of participants believed their families would want to learn about genetic counseling; after the intervention, 94% of participants indicated their family’s interest in genetic counseling. About 40% of women reported confidence in who to call to make a genetic counseling appointment.
This study’s efforts were a success, the study was designed to motivate black women with genetic breast cancer risk to attend genetic counseling. The study demonstrated changes in the participant’s decisions about genetic counseling. The Henderson Group designed a culturally specific, evidence-based, cost-effective decision intervention. Overall, self-efficacy and decisions to attend genetic counseling were increased. This intervention should be further investigated to identify ethnic women with genetic breast cancer risk and aid in closing the disparities gap. . Dr. Henderson concluded, “ Our future work will focus on cascade testing. Cascade testing is a systematic effort to test close blood relatives of individuals who test positive for a pathogenic variant (probands). All blood relatives of probands are at increased risk of having the variant.”
Next, Dr. Henderson elaborated on her project, “ Cascade testing relies on probands disclosing the presence of a heritable genetic variant to at-risk family members. Given the Health Insurance Portability and Accountability Act (HIPPA), genetic variant status disclosure falls on the responsibility of the known carrier as opposed to healthcare providers and disclosure can be associated with emotional distress and difficulty in conveying genetic information. Unfortunately, uptake of genetic testing by relatives to whom genetic risk is disclosed by the carrier is only 15-57%. We will develop an intervention that decreases knowledge gaps, promotes shared decision making and trust, and facilitates communication about genetic services, specifically as it relates to sharing information with familial networks, specifically among Black women with known pathogenic variants for breast cancer.”
Fred Hutch/University of Washington/Seattle Children's Cancer Consortium member Vida Henderson led this work.
Henderson V, Madrigal JM, Kendall LC, Parekh P, Newsome J, Chukwudozie IB, Comer-Hagans DL, Coffey V, Grumbach G, Spencer S, Rodgers C. Pilot study of a culturally sensitive intervention to promote genetic counseling for breast cancer risk. BMC Health Services Research. 2022 Dec;22(1):1-9.