title: Young adult daughters of BRCA1/2 positive mothers: what do they know about hereditary cancer and how much do they worry?
abstract: OBJECTIVE
  The objectives of this study are to determine (i) what daughters, ages 18-24 years, of BRCA1/2 mutation carriers understand about their 50% chance of carrying a BRCA1/2 mutation and about risk reduction or management options for mutation carriers, (ii) the extent and nature of daughters' cancer-related distress, and (iii) the effects of knowing mother's mutation status on daughters' future plans.
  
  
  METHODS
  A total of 40 daughters, currently aged 18-24 years, of mothers who tested positive for a mutation in BRCA1/2 were invited by mail to participate (with contact information supplied by their mothers). Daughters participated in a qualitative telephone interview about the impact of learning their mother's mutation status on their understanding of their own cancer risks and their cancer-related distress, and their knowledge of screening strategies, risk-reducing surgery, current health status, and future plans. Participants also completed study-specific demographic and family history questionnaires, the Brief Symptom Inventory-18, Impact of Event Scale (with hereditary predisposition to breast/ovarian cancer as the event), and the Breast Cancer Genetic Counseling Knowledge Questionnaire.
  
  
  RESULTS
  Daughters' genetic knowledge is suboptimal; gaps and misconceptions were common. Over 1/3 of the daughters reported high cancer-related distress, despite normal levels of general distress. Disclosed genetic information raised future concerns, especially regarding childbearing.
  
  
  CONCLUSIONS
  Targeted professional attention to this high-risk cohort of young women is critical to inform the next generation of daughters of BRCA1/2 mutation carriers and encourage recommended screening by age 25 years. Improved uptake of screening and risk reduction options could improve survival, and psychoeducation could reduce cancer-related distress.
authors: Dana-Farber Cancer Institute, Boston, MA 02215, USA. andrea_patenaude@dfci.harvard.edu
authors: Andrea F
authors: AF
authors: Patenaude
authors: Nadine
authors: N
authors: Tung
authors: Paula D
authors: PD
authors: Ryan
authors: Leif W
authors: LW
authors: Ellisen
authors: Larissa
authors: L
authors: Hewitt
authors: Katherine A
authors: KA
authors: Schneider
authors: Kenneth P
authors: KP
authors: Tercyak
authors: Julie
authors: J
authors: Aldridge
authors: Judy E
authors: JE
authors: Garber
mesh_terms: D000293:Adolescent; D032721:Adult Children / Q000523:psychology; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D061325:Hereditary Breast and Ovarian Cancer Syndrome / Q000523:psychology*; D006579:Heterozygote; D006801:Humans; D009679:Nuclear Family / Q000523:psychology; D013315:Stress, Psychological / Q000523:psychology*; D055815:Young Adult
keywords: BRCA1/2; cancer risk; hereditary breast/ovarian cancer; mutation carriers; preventive oncology; psychoeducational intervention