title: In their own words: treating very young BRCA1/2 mutation-positive women with care and caution.
abstract: OBJECTIVE
  Young women who have been identified as carrying a deleterious mutation in BRCA1 or BRCA2 face a unique set of challenges related to managing cancer risk during a demographically-dense stage of life. They may struggle with decision-making in the absence of clear age-specific guidelines for medical management and because they have not yet fully developed the capacity to make life-altering decisions confidently. This study sought a patient-centered perspective on the dilemmas faced by 18-24 year olds who completed BRCA1/2 gene mutation testing prior to their 25(th) birthdays.
  
  
  METHODS
  This study integrated qualitative data from three independent investigations of BRCA1/2-positive women recruited through cancer risk clinics, hospital-based research centers, and online organizations. All 32 participants were women aged 21-25 who tested positive for a BRCA1/2 gene mutation between 2 and 60 months prior to data collection. Investigators used techniques of grounded theory and interpretive description to conduct both within and cross-study analysis.
  
  
  RESULTS
  Participants expressed needs for (1) greater clarity in recommendations for screening and prevention before age 25, especially with consideration of early and regular exposure to radiation associated with mammography or to hormones used in birth control, and (2) ongoing contact with providers to discuss risk management protocols as they become available.
  
  
  CONCLUSIONS
  Health care needs during the young adult years evolve with the cognitive capacity to address abrupt and pressing change. Specific needs of women in this population include a desire to balance autonomous decision-making with supportive guidance, a need for clear, accurate and consistent medical recommendations. Optimally, these women are best cared for by a team of genetically-oriented providers as part of a sustained program of ongoing support, rather than seen in an episodic, crisis-driven fashion. A discussion of insurance issues and provider-patient cultural differences is presented.
authors.affiliation: Clinical Genetics Branch, National Cancer Institute, Bethesda, Maryland, United States of America.
authors.forename: Lindsey M
authors.initials: LM
authors.lastname: Hoskins
authors.affiliation: Social Policy and Practice, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America.
authors.forename: Allison
authors.initials: A
authors.lastname: Werner-Lin
authors.affiliation: Clinical Genetics Branch, National Cancer Institute, Bethesda, Maryland, United States of America.
authors.forename: Mark H
authors.initials: MH
authors.lastname: Greene
mesh_terms: D000293:Adolescent; D000328:Adult; D019313:BRCA1 Protein / Q000235:genetics*; D024682:BRCA2 Protein / Q000235:genetics*; D001943:Breast Neoplasms / Q000235:genetics*; D003657:Decision Making; D003695:Delivery of Health Care; D005260:Female; D006801:Humans; D009154:Mutation; D055815:Young Adult
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human