Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

Abstract

BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA’s decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.

Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment

“…Nonetheless, findings echo many of the experiences and needs expressed by our non-Latina patients [17, 28, 33] and other studies with high-risk non-Latina breast cancer patients [34–36]. Although attendees were demographically representative of Latinas in our clinics, they may represent a select group with on-going post-GCRA needs and may not be representative of Latinas elsewhere.…”

Decision aid prototype development for parents considering adenotonsillectomy for their children with sleep disordered breathing

“…However, it is to be noted that data saturation occurred with the iterative qualitative process, which indicates that further feedback may not have necessarily generated new data. As well, several other decision aid prototype development studies used similar number of stakeholders [29–31, 33, 34]. Clearly, a pilot trial is necessary to assess for wider usability, which will be followed by a randomized controlled trial to assess the effectiveness of the decision aid before the tool can be implemented into routine clinical practice.…”

Seeking Balance: Decision Support Needs of Women Without Cancer and a Deleterious BRCA1 or BRCA2 Mutation

“…From the decision making literature, we know that decision support interventions can improve decision making quality and knowledge for persons who are trying to choose between multiple health options (Légaré et al 2006; O’Connor et al 1998; Stacey et al 2011). Decision making aides have been developed to help support women at high risk for hereditary breast and ovarian cancer (Culver et al 2011; Hooker et al 2011; Kurian et al 2012; Metcalfe et al 2007: Schwartz et al 2009; Van Roosmalen et al 2004), making genetic testing decisions or for those with cancer making surgical decisions. Our study adds to this literature by exposing the context in which decision making occurs.…”