Next Generation Education for Prevention: Defining Educational Needs, Attitudes, Concerns, Life Plans of 18-24 Year Old Daughters of BRCA1/2 Mutation Carriers.

摘要

The goals of this study are to (1) Describe in-depth the knowledge, attitudes, health behaviors, and life plans of a cohort of 40 daughters, ages 18-24 years, of mothers who are BRCA1/2 mutation carriers, and (2) Define specific health educational, psychological, insurance and medical needs of this population. The major data source for this project are the 40 in-depth, qualitative (semi-structured), telephone interviews with 18-24 year old daughters of BRCA1/2 mutation carriers . Preliminary analysis suggests that there are significant gaps in essential breast cancer genetics knowledge among this cohort, supporting the need for a targeted educational intervention. We have now completed our work with the Dana-Farber/Harvard Communications Core, graphic designers and cancer communication experts, to design the small pilot version of the intervention. We have very recently received approval from the USAMRMC IRB and are ready to begin recruitment of eligible daughters for pilot testing of the intervention materials. A manuscript reporting on the reactions, distress and genetic testing plans of this at-risk population is also in progress.