Enhancing At-risk Latina Women's Use of Genetic Counseling for Hereditary Breast and Ovarian Cancer

Breast cancer is the most diagnosed cancer for Latinas and is their leading cause of cancer
death. Compared to non-Latina Whites, Latinas are diagnosed younger and with more advanced
breast cancer. They also have the second highest prevalence of BRCA1 or BRCA2 gene mutations,
that significantly increases their lifetime risk of developing hereditary breast and ovarian
cancer (HBOC). The US Preventive Services Task Force recommends referral for genetic cancer
risk assessments (genetic counseling and risk assessment as appropriate; GCRA) for women at
high risk of carrying a mutation. GCRA informs treatment for survivors and risk management
decisions in unaffected women. Latinas have lower GCRA use than Whites.

Explanations for Latinas' suboptimal GCRA participation include environmental (e.g. access)
and psychosocial factors (e.g. low knowledge, emotions). There are numerous interventions to
promote GCRA use in White populations and the mere handful of interventions that do target
Latinas mostly consists of Mexicans or Puerto Ricans. Empirical evidence about successful
strategies to improve GCRA uptake is lacking, especially from a growing population of
Central/South American immigrants, a group with nuanced different barriers (e.g. social
isolation). Our preliminary data suggests that improving access does not necessarily
translate into higher GCRA uptake. Our data also highlighted providers' challenges in
communicating GCRA risk information given the dearth of genetic materials in Spanish and
Spanish-speaking genetic counselors. Media-based tools used to educate Latinas before GCRA
are needed. This study will fill these gaps.

To be effective, risk HBOC communication interventions should be anchored within the needs
and cultural values of their audience. This is because individuals process risk information
in the context of "mental models" - one's intuitive beliefs based on personal experiences and
shared cultural knowledge. Mental models influence the interpretation of new information.
Often there is incongruence between lay and expert mental risk models that leads to
miscommunication and uninformed decision-making. For example, among Latinas, the word
"testing" led to the misconception that genetic testing would be repeated akin to other
screening tests like mammography. Understanding Latinas' mental models will facilitate
targeted risk communication to identify knowledge gaps and reduce misconceptions.
Interventions that only address knowledge and/or beliefs may not enhance uptake, as risk
information evokes emotional reactions that are often stronger predictors of behaviors than
cognitive factors. Anticipated negative emotions to GCRA have been associated with lower
uptake. Latinas report ambivalence towards GCRA that may impact their decisions. As most
interventions have focused on knowledge and/or access, our study makes a considerable shift
in the field by addressing mental models and targeting emotions.

This experienced multidisciplinary team will conduct a risk communication intervention
designed to target mental models, emotions, and cultural values. Guided by the Theory of
Planned Behavior and Social Cognitive Theory, the investigators will conduct a two-phased
mixed methods study. In Phase I the investigators will interview key informants (n=10) and
at-risk Latinas (n=20) to describe their mental models and other psychosocial factors. These
data will inform the risk-benefit messages that will be evaluated in focus groups (n=20) and
used to develop a YouTube-based intervention, which will be delivered via Latina actors and a
trusted medical personality. In Phase II the investigators will pilot the intervention on
at-risk Latinas (n=40). Participants will complete a baseline survey, watch the 15-minute
video, complete a follow-up assessment, and be referred to a patient navigator for resources.
The primary outcome is intentions to use GCRA. GCRA uptake will be assessed at 3-months.
Specific aims are:

Aim 1. Describe and portray Latinas' GCRA mental models (e.g. risks and benefits
perceptions).

Aim 2. Using data from Aim 1, develop the content of the risk-benefit communication messages
for at-risk Latinas and incorporate these into a Spanish-language YouTube video.

Aim 3. Evaluate the acceptability and pre- and post-intervention differences on the primary
outcome (intentions to use GCRA) and intermediate outcomes (e.g. attitudes). We will also
explore post-intervention GCRA uptake as a secondary outcome. H.2.1. The intervention will
result in a significant increase in intentions to use GCRA, and in H.2.2. improvements of
intermediate outcomes: knowledge, attitudes, self-efficacy, and emotional ambivalence. H.2.3.
After the intervention, 30% of Latinas will participate in GCRA by 3-months
post-intervention. H.2.4. The majority (≥75%) will be satisfied with the intervention.

This study meets the Healthy People 2020 goals to enhance GCRA in at-risk populations, and
the national priorities to increase diversity in genetics research participation and
incorporate emotions into cancer research. Findings will inform new strategies for behavioral
interventions targeting Latinas and a larger trial.

Inclusion Criteria:

- self-identify as Latino/Hispanic, >21 years of age, and are at high risk of carrying a
HBOC mutation using personal and family cancer histories based on the National
Comprehensive Cancer Network

Exclusion Criteria:

- not having the cognitive ability to provide informed consent