The National Cancer Institute conducted four focus groups with women ages 25-50 who were either at high risk or potentially high risk for breast cancer (Ashkenazi Jewish women, women with family history of breast cancer, and women attending a breast cancer clinic) to explore their perceptions and attitudes toward participating in breast and ovarian cancer prevention trials. Types of prevention studies examined were genetic registries, more frequent imaging, lifestyle changes, chemoprevention studies, prophylactic surgery, and prophylactic surgery combined with imaging, chemoprevention, or different surgical techniques. The topic guide focused on participants' willingness to participate in such studies, factors that would be important in their decision making, and the best way to inform and communicate with them about prevention trials. For all prevention options except the genetic registry, reactions to being randomized were also explored. Examples of issues that emerged were privacy and insurability for registries, increased radiation exposure for imaging (especially during childbearing years), concern about the ability to sustain lifestyle changes over an extended time, concern about safety and side effects of chemoprevention agents, and strong opposition to randomized prophylactic surgery. Transcendent themes included confidentiality of study participation, control over one's body and genetic information, and a preference for non-invasive, less restrictive studies. Participants preferred to receive written information after (or at the same time) they undergo genetic testing but before receiving their genetic test results. Current study underscores the importance of designing prevention trials that minimize costs and maximize benefits of participation from the participant's point of view.
Learning Objectives: At the conclusion of the session, the participant will be able to discuss the perceptions, concerns, and information needs of women at high risk for breast cancer regarding participation in cancer prevention trials
Keywords: Prevention, Clinical Trails
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.