PROJECT SUMMARY/ABSTRACT
Genetic testing has transformed cancer care. Providers use genetic testing results to optimize treatment and
improve early detection. The benefits of genetic testing, however, are incompletely realized because of
communication failures within families. Across multiple studies it has been shown that patients infrequently
inform family members about genetic test results that reveal pathogenic or likely pathogenic findings,
particularly in the community practice setting. Because of this lack of communication, family members are
unable to get genetic testing to further elucidate their own risk and receive relevant risk reducing care. Further,
because there are profound inequities in the availability of genetic services among underrepresented racial and
ethnic minorities, effective communication within families from different cultural backgrounds will be an
essential step to overcoming these genetic disparities.
We will address these profound gaps in genetic care and communication by developing and pilot testing a
multi-level e-health intervention to improve family communication of hereditary cancer risks. In the proposed
work we integrate communication science and behavioral theory to develop a patient and family focused multi-
level intervention to facilitate genetic risk communication (patient) and cascade testing (family) (Aim 1). For
Aim 1, we will engage patients, family members, and providers in an iterative process of development and user
testing. Our intervention will be developed in both Spanish and English and will be created on an e-Health
Platform that our team has specifically designed for genetic risk communication. We will then evaluate the
feasibility and acceptability of the intervention in a pilot study in underserved practice settings (Aim 2). Our
overarching hypothesis is that a greater proportion of patients who use the intervention as compared to usual
care, will communicate cancer risk information to family members and that family members who use the
intervention will be more likely to get genetic testing. We will conduct our trial in the context of the City of Hope
Community of Practice, which draws from providers who deliver cancer genetic care to underserved patients in
myriad clinical settings across all 50 states (N=577). This research program will have high impact if successful
as it will yield a scalable, state-of-the-art e-health intervention to improve family communication of hereditary
cancer risk that will be evaluated in a future randomized trial. Identification of large numbers of patients with
cancer risk variants through the City of Hope Community of Practice and the expressed need and interest of
this cohort of providers ensures study feasibility. With expertise in cancer genetics, communication,
intervention development, and clinical trials, our team is ideally positioned to achieve the proposed work. In
sum, Family1st will meet a critical need in cancer genetics care by providing an evidence-based, patient-
centered intervention to optimize the communication of hereditary cancer risk within families.
