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

摘要

The goals of this study were 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 found significant genetics knowledge gaps, high cancer-related distress, worries about the impact of BRCA1/2 risk and risk reduction options on marriage and childbearing and high levels of interest in a targeted, web- based resource about BRCA1/2 for young, high-risk women. The major data source for this project were the 40 in-depth, qualitative (semi-structured) telephone interviews with 18-24 year old daughters of BRCA1/2 mutation carriers. Additional quantitative data included demographic and family history questionnaires, the Brief Symptom Inventory-18, Impact of Event Scale and the Breast Cancer Genetic Testing Knowledge Scale. Subjects were selected from among the age-eligible daughters of mutation-positive women tested at the DFCI, Mass General Hospital (MGH), and Beth Israel Deaconess Medical Center (BIDMC) between 2000-2009. Having this data has enabled us to proceed towards development of a psycho-educational health and support intervention targeted to the identified needs of 18-24-year-old daughters of BRCA1/2 mutation carriers which could ultimately reduce mortality and morbidity. We believe that an educational intervention to help inform young women as they come to an age at which they can make independent decisions about genetic testing and breast cancer screening would be valuable and potentially life-saving in its impact. This intervention will, we hope, encourage high-risk, young women to consider earlier the choices they face with regard to hereditary cancer risk and will empower them through provision of more accurate genetic information.