title: The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers.
abstract: Genetic testing for BRCA1/2 has psychosocial impacts including those related to views of personal health, sense of self and identity and body image. The centrality of a person's self-concept in maintaining physical and psychosocial well-being has been well recognized; however, to date research exploring altered self-concept related to carrier knowledge is limited.
  
  
  OBJECTIVE
  The objective of the study was to develop and validate a scale to measure the self-concept among individuals testing positive for BRCA1/2 mutations.
  
  
  METHODS
  The study was conducted in two phases: phase I: item generation and refinement and phase II: scale selection and initial validation. During phase I, scale items were generated through individual interviews and focus groups of women with BRCA1/2 mutations, including women with or without a prior diagnosis of cancer. In phase II items were selected based on several criteria resulting in a 25-item scale, which underwent a reliability analyses and preliminary validation with 115 women. A second sample of 126 women was used to conduct further validation and samples were pooled to conduct factor analysis and the final scale selection.
  
  
  RESULTS
  A 17-item self-concept scale emerged having three factors: stigma, vulnerability and mastery demonstrating evidence for an instrument with promising psychometric properties (total scale alpha=0.90).
  
  
  CONCLUSIONS
  The scale has direct relevance for research in facilitating our understanding of the specific aspects of the self, which are vulnerable to BRCA1/2 testing and which play a role in clinical outcomes, to facilitate the development and specific testing of interventions and may be used as an outcome measure. Specific measurement tools for genetic populations will ultimately assist in the clinical management of these populations.
authors.affiliation: Behavioral Sciences and Health, Toronto General Research Institute, University Health Network, Toronto, Ont., Canada M5G 2C4. mesplen@uhnres.utoronto.ca
authors.forename: Mary Jane
authors.initials: MJ
authors.lastname: Esplen
authors.forename: Noreen
authors.initials: N
authors.lastname: Stuckless
authors.forename: Jonathan
authors.initials: J
authors.lastname: Hunter
authors.forename: Alexander
authors.initials: A
authors.lastname: Liede
authors.forename: Kelly
authors.initials: K
authors.lastname: Metcalfe
authors.forename: Gordon
authors.initials: G
authors.lastname: Glendon
authors.forename: Steven
authors.initials: S
authors.lastname: Narod
authors.forename: Kate
authors.initials: K
authors.lastname: Butler
authors.forename: Jenna
authors.initials: J
authors.lastname: Scott
authors.forename: Ellen
authors.initials: E
authors.lastname: Irwin
mesh_terms: D001828:Body Image; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics / Q000523:psychology; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D006579:Heterozygote; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D011581:Psychological Tests; D015203:Reproducibility of Results; D012649:Self Concept