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

• Published in: Genetics in medicine Vol. 8; no. 4; pp. 226 - 233
• Main Authors: Peterson, Susan K, Pentz, Rebecca D, Blanco, Amie M, Ward, Patricia A, Watts, Beatty G, Marani, Salma K, James, Leslie Colvin, Strong, Louise C
• Format: Journal Article
• Language: English
• Published: United States 01.04.2006
• Subjects: Adult; Aged; Decision Making; Decision Support Techniques; Family - psychology; Female; Genetic Counseling - psychology; Genetic Predisposition to Disease - psychology; Genetic Testing - psychology; Humans; Li-Fraumeni Syndrome - genetics; Li-Fraumeni Syndrome - prevention & control; Longitudinal Studies; Male; Middle Aged; Mutation; Outcome Assessment, Health Care; Patient Participation; Tumor Suppressor Protein p53 - genetics
• ISSN: 1098-3600; 1530-0366
• DOI: 10.1097/01.gim.0000214632.52958.01

Li-Fraumeni syndrome (LFS) is associated with p53 germline 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. 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. 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. 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.