Evaluation of a Peer-Staffed Hotline for Families Who Received Genetic Testing for Risk of Breast Cancer
Final rept. 15 Jul 2001-15 Jul 2004
PENNSYLVANIA UNIV PHILADELPHIA
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This project proposed to develop, implement, and evaluate a peer-staffed toll-free hotline for individuals at high risk of developing hereditary breast cancer, either through family history or known BRCA12 mutations. The project is designed to demonstrate the acceptability and effectiveness of this tool for meeting the needs of these individuals and their families, and documents the range of problems for which assistance is sought. We have designed and implemented a refined peer counselor protocol that can be disseminated in larger multiple component peer-support packages. The Helpline Manual and Resource Guide was completed and distributed to our volunteers as part of an intensive training program. We successfully established the hotline, now called The PennF.O.R.C.E Telephone Helpline for individuals Concerned about Hereditary Breast and Ovarian Cancer, and opened the phone lines to the public on December 2, 2003. To date caller response to this service has been enthusiastically positive and has resulted in uptake of referrals to genetic counselors and gynecologic oncologists. Our counselors have addressed both psychosocial and practical issues associated with knowledge of mutation status, anxiety about personal and familial risk, communications difficulties with family and health professionals, concerns about discrimination, and difficulties accessing appropriate medical and support services.
- Genetic Engineering and Molecular Biology
- Medicine and Medical Research