title: Feasibility evaluation of an online tool to guide decisions for BRCA1/2 mutation carriers.
abstract: Women with BRCA1 or BRCA2 (BRCA1/2) mutations face difficult decisions about managing their high risks of breast and ovarian cancer. We developed an online tool to guide decisions about cancer risk reduction (available at: http://brcatool.stanford.edu ), and recruited patients and clinicians to test its feasibility. We developed questionnaires for women with BRCA1/2 mutations and clinicians involved in their care, incorporating the System Usability Scale (SUS) and the Center for Healthcare Evaluation Provider Satisfaction Questionnaire (CHCE-PSQ). We enrolled BRCA1/2 mutation carriers who were seen by local physicians or participating in a national advocacy organization, and we enrolled clinicians practicing at Stanford University and in the surrounding community. Forty BRCA1/2 mutation carriers and 16 clinicians participated. Both groups found the tool easy to use, with SUS scores of 82.5-85 on a scale of 1-100; we did not observe differences according to patient age or gene mutation. General satisfaction was high, with a mean score of 4.28 (standard deviation (SD) 0.96) for patients, and 4.38 (SD 0.89) for clinicians, on a scale of 1-5. Most patients (77.5 %) were comfortable using the tool at home. Both patients and clinicians agreed that the decision tool could improve patient-doctor encounters (mean scores 4.50 and 4.69, on a 1-5 scale). Patients and health care providers rated the decision tool highly on measures of usability and clinical relevance. These results will guide a larger study of the tool's impact on clinical decisions.
authors.affiliation: Departments of Medicine and of Health Research and Policy, Stanford University School of Medicine, Stanford, CA 94305-5405, USA.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Schackmann
authors.forename: Diego F
authors.initials: DF
authors.lastname: Munoz
authors.forename: Meredith A
authors.initials: MA
authors.lastname: Mills
authors.forename: Sylvia K
authors.initials: SK
authors.lastname: Plevritis
authors.forename: Allison W
authors.initials: AW
authors.lastname: Kurian
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics*; D003198:Computer Simulation; D003657:Decision Making; D003661:Decision Support Techniques; D005240:Feasibility Studies; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D006579:Heterozygote; D006801:Humans; D020407:Internet; D008875:Middle Aged; D009154:Mutation; D009862:Online Systems; D010051:Ovarian Neoplasms / Q000235:genetics*; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D055815:Young Adult