The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers

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 1: item generation and refinement and phase II: scale selection and initial validation. During phase 1, 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. Copyright (C) 2009 John Wiley & Sons, Ltd.