Evaluation of a decision aid for families considering p53 genetic counseling and testing

• Type of Material: Article
• Authors: Susan K. Peterson, University of Texas; Rebecca Pentz, Emory University; Amie M. Blanco, University of California San Francisco; Patricia A. Ward, Baylor College of Medicine; Betty G. Watts, University of Texas; Salma K. Marani, University of Texas; Leslie James, University of Texas; Louise C. Strong, University of Texas
• Language: English
• Date: 2006-04-01
• Publisher: Springer Nature [academic journals on nature.com]: Hybrid Journals - choice of CC licence
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © American College of Medical Genetics.
• Final Published Version (URL): http://dx.doi.org/10.1097/01.gim.0000214632.52958.01
• Title of Journal or Parent Work: Genetics in Medicine
• ISSN: 1098-3600
• Volume: 8
• Issue: 4
• Start Page: 226
• End Page: 233
• Keywords: BREAST-CANCER SUSCEPTIBILITY; FUTURE-DIRECTIONS; RISK; decision aid; LI-FRAUMENI-SYNDROME; Genetics & Heredity; genetic testing; Life Sciences & Biomedicine; genetic counseling; Science & Technology; KNOWLEDGE; SOFT-TISSUE-SARCOMA; VALIDATION; COMPUTER-PROGRAM; psychosocial; p53; CONTROLLED-TRIAL; MUTATIONS
• Research Categories: Biology, Genetics

Abstract

Purpose: Li-Fraumeni syndrome (LFS) is associated with p53germline mutations, and carriers are at increased risk for multiple primary cancers. We evaluated outcomes following the administration of a video-based decision aid (DA) prior to clinical p53 genetic counseling and testing among persons who had previously participated in cancer genetics research. Methods: Fifty-seven individuals at risk for a known p53 mutation completed baseline and post-DA measures of psychological outcomes, plus knowledge and attitudes regarding p53 genetic testing. Counseling and testing uptake also was recorded. Results: At baseline, multivariate analysis showed that greater testing intention was associated with lower decisional conflict (P < 0.01). Compared with baseline data, multivariate analyses of post-DA outcomes showed that knowledge about LFS and genetic testing increased and decisional conflict related to testing decreased (P < 0.001). Mean cancer worries scores decreased among all participants (P < 0.001), and mean depression scores decreased for males (P < 0.05). Thirty-nine (68%) completed pre-test genetic counseling and 23 (40%) subsequently gave a blood sample for clinical genetic testing. Conclusion: This intervention was useful as an initial outreach and educational method for families considering p53 genetic testing, and may improve knowledge about LFS as well as psychological outcomes.