Pilot study of a culturally sensitive intervention to promote genetic counseling for breast cancer risk

Abstract

Background Despite the benefits of genetic counseling and testing, uptake of cancer genetic services is generally low and Black/African American (Black) 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 genetic counseling among Black women at risk for a hereditary breast cancer syndrome that can be incorporated in conjunction with population-based cancer risk assessment in a clinical setting. We report here a pilot study to demonstrate changes in intention to access genetic counseling and intervention satisfaction. Methods Black women who were personally unaffected by breast cancer and were recommended for genetic counseling based on family history screening 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 genetic counseling 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 genetic counseling appointment, compared with 70% post-intervention (p = 0.05). After watching the intervention, 50% of participants indicated that the video changed their mind regarding genetic counseling. Conclusions This study demonstrated cultural satisfaction with a decision aid intervention designed to motivate Black women with hereditary breast cancer risk to attend a genetic counseling 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. Trial registration Trial registration: Clinicaltrials.govNCT04082117. Registered September 9, 2019. Retrospectively registered.

Design and pilot implementation of the Achieving Cancer Equity through Identification, Testing, and Screening (ACE‐ITS) program in an urban underresourced population

“…With the service delivery aspect of the process addressed, greater attention could then be paid to those referred to genetic counseling. Prior work has documented that approaches such as culturally appropriate narrative decision aid videos increase knowledge and positive attitudes toward and intentions to attend genetic counseling 29–32 . These approaches could be included in future studies that focus directly on individuals at high risk for cancer.…”

“…proaches such as culturally appropriate narrative decision aid videos increase knowledge and positive attitudes toward and intentions to attend genetic counseling. [29][30][31][32] These approaches could be included in future studies that focus directly on individuals at high risk for cancer.…”

Interventions to support decision making in people considering germline genetic testing for BRCA 1/2 pathogenic and likely pathogenic variants: A scoping review

“…To address racial and socioeconomic disparities in access to cancer genetics services (Lin et al, 2021), interventions should be developed and tested in studies that recruit diverse samples or use population‐based recruitment methods. Recently published protocols and intervention development papers suggest several culturally tailored interventions to support genetic testing decisions are in development (Henderson et al, 2021, 2022; Hurtado‐de‐Mendoza et al, 2020).…”

“…Interventions developed to support BRCA1/2 testing decisions may have limited utility for people considering multigene panel testing. (Henderson et al, 2021(Henderson et al, , 2022Hurtado-de-Mendoza et al, 2020).…”