Testing a Low Cost Population- and Theory-Based Outreach Intervention to Engage Ovarian Cancer Survivors and their Close Relatives to Consider Genetic Services

Most women at the greatest risk for ovarian cancer have not been informed about their elevated risk. With the availability of life-saving prevention options, novel approaches to identify and inform these women is urgently needed. Current specialty cancer-care approaches that identify patients with ovarian cancer show limited reach to close relatives who could benefit most. Traceback approaches that leverage state-wide cancer registries' ongoing surveillance activities offer a potentially low cost platform for outreach to ovarian cancer survivors' close relatives. Communication theories suggest the need for risk messages that address cancer fatalism and tendencies to discount and distance oneself from information in this context. Ubiquitously available technology can be a channel for these messages and genetic services can be offered via creative clinician-in-training partnerships. However, ethical questions will arise when shifting from clinic-based cascade screening to population-level traceback programs. For example, the prevailing notion that patients must make initial contact with close relatives warrants reconsideration; preferences regarding contact when patient's mutation status is unknown have yet to be assessed. Citizen science methods offer a feasible platform for gaining community wisdom related to the ethical challenges of population outreach. In alignment with the PAR 18-616 call for “innovative pilot studies of traceback methods to identify ovarian cancer survivors and close relatives,” the specific aims are: Aim 1: To enlist community partners as citizen scientists to: identify and recruit Georgia residents with a personal/family history of ovarian cancer, generate content, and collaborate on a scalable message-based outreach intervention to reach ovarian cancer survivors and close relatives (i.e., first- and second-degree relatives) to consider genetic service options. Aim 2: In a two-arm randomized intervention trial (N~2,918), to compare a message-based outreach intervention to standard outreach for effects on: survivor reach, relative reach, and uptake of appropriate cancer genetic services (i.e., genetic counseling and testing for survivors, online genetic risk assessment for relatives) among survivors of ovarian cancer identified via a state cancer registry. We hypothesize that the message-based approach will result in greater reach and uptake of genetic services than standard outreach. Aim 3: To conduct a process evaluation consistent with the RE-AIM framework alongside the RCT to measure: reactions, dose delivered/received, fidelity, acceptability, barriers/facilitators, and alignment with ethical principles. If shown to be effective, results could inform programs to fairly offer genetic services in other states and for other heritable cancers.