Abstract P4-18-02: Peer navigation for people affected by hereditary breast, ovarian and related cancers: Results from the first six months

Abstract

People affected by hereditary breast, ovarian, and related cancers (HBOC) due to a mutation in BRCA, or another gene that increases cancer risk, have unique support and information needs and face medical decisions that differ from survivors of sporadic breast cancer and from people at average risk for these cancers. Finding peers to talk to can be challenging, especially for people living outside of metropolitan areas. FORCE (Facing Our Risk of Cancer Empowered) developed our Peer Navigation Program to provide personalized, expert-reviewed resources and 1:1 support for people affected by HBOC, including breast cancer survivors and people at high risk for breast cancer due to a mutation in BRCA or another gene that increases cancer risk. The program utilizes a custom database that matches individuals seeking support with trained Peer Navigators who have faced similar medical challenges and decisions. Users complete an intake form, providing basic demographic, medical, and geographic information in order to match them as closely as possible to a peer volunteer. The user selects from 21 specific topics of interest to them. This generates a personalized, expert-reviewed resource guide on each selected topics, which individuals can use to make informed, shared decisions with their healthcare providers. Trained Peer Navigators conduct one-hour phone calls with program users to discuss the personalized resources and provide non-judgmental emotional support. Our goal is to match users and complete the navigation process within one week from the time they submitted their intake form. After a navigation session, both the Peer Navigator and the program participant are asked to fill out an evaluation. All Peer Navigator volunteers undergo a written and telephone interview to assure their readiness to help others. Once they pass this screening process, they complete a series of online VolunteerFORCE Academy training webinars and complete a profile form providing information about their demographics, personal and medical situation, and medical decisions. Volunteers receive training on the following: FORCE 101, HBOC 101, Active Listening Skills and Peer Navigation instructions. All webinars have been reviewed and approved by a member of FORCE's Scientific Advisory Board and our Vice President of Education. The webinars stress several important themes, including: encouraging users to discuss information with medical experts, avoiding dispensing of personal or medical advice, and maintaining a non-judgmental perspective. We have 104 trained peer navigators, both male and female, ranging in age from 21 – 73. Both cancer survivors, as well as high-risk individuals are represented. Peer volunteers come from diverse backgrounds and geographic locations, and have made a variety of medical decisions about genetic testing, cancer screening, chemoprevention, and risk-reducing surgeries. The program launched in April 2016. We will present results from post-call evaluation surveys completed from April 1, 2016 through September 30, 2016. Data on most commonly requested topics, user satisfaction, ease of use, and intention to use the information in shared decision-making with their health care provider will be presented. Citation Format: Rezende LF, Cohen S, Rose D, Friedman SJ. Peer navigation for people affected by hereditary breast, ovarian and related cancers: Results from the first six months [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P4-18-02.