Background Understanding patients’ knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients’ knowledge and information-seeking behaviors regarding PCT. Methods Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. Results Knowledge regarding cancer genetics and PCT was moderate (mean 8.7 +/− 3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. Conclusion Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients’ initial source of information about PCT. Understanding patients’ knowledge deficits at presentation may help inform patient education efforts.

Patients generally expressed low levels of concern regarding privacy of genomic data, and many expressed willingness to consent to sharing their genomic data with researchers.

INTRODUCTION: Breast cancer patients and providers are increasingly interested in personalized cancer therapy. Information-seeking behaviors and knowledge about personalized cancer therapy, cancer genetics, and molecular testing may influence patients’ participation in clinical trials and decision making regarding their care. We evaluated breast cancer patients’ knowledge and information seeking behaviors regarding personalized cancer therapy (PCT). METHODS: The study population included newly registered female breast cancer patients at The University of Texas MD Anderson Cancer Center prior to their first clinical visit. Of 308 consecutive patients who were invited to participate, 100 (32%) completed a self-administered questionnaire assessing their knowledge and information seeking preferences regarding PCT. Knowledge regarding cancer genetics and PCT research was assessed using 16 true/false questions (Cronbach’s α=0.88). A knowledge score was computed from the total number of correct responses. RESULTS: Respondents were predominantly white (70%), older (median age 55 years; SD=12.9; range 26-84), educated (78% with college degree or higher) and higher incomes (54% >$50,000/year); 71% had been diagnosed with breast cancer for at most one year at time of participation. Knowledge regarding cancer genetics and PCT was moderate (M=8.68, SD=3.8). Although most participants (85%) could correctly identify the definition of PCT, many (59%) did not know that somatic mutations are not hereditary. Many (75%) knew that molecular testing can reveal risk for other hereditary cancers. Less than half (46.5%) knew about the availability of PCT in clinical trials. A minority (27%) indicated that they had sought information regarding PCT. They sought for information related to specific treatment options. Higher education (p<0.01) and income levels (p<0.05) were associated with higher knowledge scores and with seeking PCT information (p<0.01). Those who had previously undergone any genetic testing also were more likely to seek information about PCT (29.6% vs 9.9%, p<0.05). Other demographic and clinical variables like age, race, duration of illness, cancer stage did not correlate with the knowledge score or information seeking behavior. CONCLUSION: Study participants could define PCT, but had limited knowledge of its availability and underlying treatment principles. This may be due, in part, to the fact that few participants had sought information about PCT. Understanding patients’ knowledge and prior information seeking regarding PCT may inform clinicians, who are likely to be patients’ initial source of information about PCT. Citation Format: Deevakar Rogith, Rafeek A Yusuf, Shelley R Hovick, Bryan M Fellman, Susan K Peterson, Allison Burton-Chase, Yisheng Li, Elmer V Bernstam, Funda Meric-Bernstam. Knowledge and Information seeking about personalized breast cancer therapy [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-12-13.