Understanding patients' perspectives on a tablet-based breast and ovarian cancer risk assessment tool
Background: Women with the genetic mutations BRCA1 and BRCA2 have significantly increased lifetime risk of breast and ovarian cancer. Over the last decade, substantial attention has focused on testing women for these mutations. However, the prevalence of these mutations in the general population is likely much higher than current detection rates suggest. New screening mechanisms for genetic testing referral are needed to increase identification of women potentially at high risk for carrying these mutations. Objective: The purpose of this study was to explore patient perspectives on a tablet-based breast and ovarian cancer risk assessment tool. Methods: We conducted three focus groups with patients from a multispecialty clinic in Northern California. The groups included women who: 1) had never received a mammogram; 2) had received at least one mammogram; or 3) had previously been diagnosed with breast cancer. Participants provided perspectives on the content, usability, and perceived impact of the tool. Also each participant independently used the tablet-based tool while an ethnographer observed and recorded field notes. Qualitative data were analyzed according to salient themes. Results: Seventeen participants attended focus groups. The majority felt comfortable using the tool, but three central concerns emerged: 1) the potential for the tool to either exaggerate or minimize risk perceptions; 2) patient worries over privacy of genetic information when collected on a tablet; and 3) variation in patient preferences for receiving results either from the tablet immediately or directly from their doctor. Discussion: Efficient screening of women for genetic testing referral is needed to target interventions for those at high risk for breast and ovarian cancer. However, before broad implementation, the impact of these tools on both high and low risk patients should be evaluated further. As genetic screening and testing continue to expand into new medical arenas, gathering patient perspectives will be essential.
Communication and informatics
Social and behavioral sciences
Discuss patients' perspectives on using an iPad-based genetic risk assessment tool.
Discuss potential impacts of incorporating genetic risk assessment tools into routine clinical care.
Keyword(s): Genetics, Risk Assessment
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: I am a trained qualitative researcher and have been involved on many projects examining breast cancer care.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.