Development and Testing of a Decision Aid for Unaffected Women with a BRCA1 or BRCA2 Mutation
For women who are unaffected carriers of a pathogenic BRCA mutation, cancer risk management requires ongoing education, counseling, and support from an interdisciplinary team of medical specialists, genetic counselors, and nurses specializing in genomics. The purpose of this study was to develop and pilot test an educational, patient-focused decision aid to facilitate shared decision making. A steering committee developed the prototype aid after an extensive review of the literature. The aid was designed at the ninth-grade reading level, to be consistent with internationally accepted clinical guidelines and inclusive of all risk management options and psychosocial issues important to cancer risk management decision making. The aid was tested with 23 participants: eight experts and 15 end users. Eleven survey items were asked related to organization, clarity, usefulness, comprehensiveness, ease of understanding, and relevance to the cancer risk management decision-making process. Mean scores were 3 or higher on Likert scales of 1–4 (high) for each of the 11 items. Two open-ended questions elicited general comments and suggestions for additions, deletions, or revisions to the decision aid. The steering committee made final revisions to the aid based on participant feedback and committee consensus.
KeywordsBRCA 1/2 Genetics/genomics Hereditary breast and ovarian cancer syndrome Decision aid Educational material
This study was funded in part by the Pi Epsilon chapter of Sigma Honor Society for Nursing.
Compliance with Ethical Standards
Approvals were obtained from the Committee for the Protection of Human Participants in Research at Emmanuel College, the executive director of FORCE, and the regional FORCE support group chairperson. Informed consent was obtained from all individual participants included in the study.
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