Next Generation Education for Prevention: Defining Educational Needs, Attitudes, Concerns, Life Plans of 18 to 24 Year Old Daughters of BRCA1/2 Mutations 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. We will then outline a health educational intervention targeted to identified needs of our target group. Our major data source will be the 40 in- depth, qualitative (semi-structured), telephone interviews we will conduct with 18-24 year old daughters of BRCA1/2 mutation carriers. To date we have ascertained nearly 200 eligible mothers (many with multiple eligible daughters) at 3 Harvard teaching hospitals, gotten IRB approvals and an NIH Certificate of Confidentiality, developed and pre-tested our questionnaire and interview schedule and initiated piloting of these materials. We have also, however, encountered significant administrative hurdles which took longer than anticipated to clear, leaving us behind our original timeline. We anticipate catching up over the next year and, as originally anticipated, having quantitative findings and a qualitative report by the end of Year 2 when we expect to have conducted, transcribed, coded and analyzed 40 interviews with young adult daughters of BRCA1/2 mutation carriers.