Abstract PS9-28: Patient knowledge, attitudes and perceptions regarding breast cancer biomarkers, testing, and quality of life
Authors: Hope S. Rugo, Kelly Shanahan, Elizabeth Attias, Miriam Portman, Jenna Gencarelli
Journal: Cancer Research (2021)

Abstract Background: Precision medicine and molecular testing for specific biomarkers to inform treatment selection has evolved to become the standard of care for advanced breast cancer. Although there is widespread education for health care practitioners, there is less education available for patients. Two surveys from the oncology literature (Pinheiro 2017, Ciardiello 2016), reported that 90% of physicians worldwide utilize biomarkers and patients would like to understand how testing informs treatment. The objective of this survey was to gain a greater understanding of patient familiarity with biomarker testing, specifically ESR1 mutation testing, and willingness to request information and testing. Patients were also surveyed about other areas of education of greatest interest, including quality of life (QOL) issues. Methods: A 10 question on-line survey was sent to patients through 2 patient advocacy organizations: CURE’s CURExtra e-newsletter, and METAvivor’s social media channels; METAvivor’s survey included 2 additional questions to determine if respondents had metastatic disease and were currently on treatment. The survey asked about side effects impacting quality of life, satisfaction with information received about QOL issues, and knowledge about biomarkers (specifically ESR1), as well as willingness to request ESR1 testing. Results: A total of 343 completed responses were received: 177 from CURE and 166 from METAvivor, 82.5% from patients, 11% from patients who were patients and advocates, 2.3% from advocates, and 4.3% other. Disease subgroups included ER+/HER2- (53%), ER+/HER2+ (16%), TNBC (12%) and ER-/HER2+ (11%). The mean and median times from diagnosis were 8.25 and 6 years. 22% of patients surveyed were familiar with or aware of biomarker testing; only 12% were familiar with ESR1 mutations and biomarker testing. In contrast, 75% of respondents were very likely (52%) or likely (23%) to ask their provider about ESR1 mutations if this would aid in tailoring treatment, with METAvivor respondents more likely to than CURE respondents (78 vs 70%). 71% were very likely (49%) or likely (22%) to request ESR1 mutation testing. Survey respondents identified 3 areas of greatest interest: new treatments in development, QOL, and management of side effects. Joint (62%) and bone pain (48%) were identified as negatively impacting QOL followed by sexual intimacy and recurrent urinary tract infections (52%). 51% reported that GI disturbances were concerns. 55% were very satisfied or satisfied with the QOL information that they were receiving from their provider and 54% looked to their providers as their primary source of information, with 27% citing the internet and medical journals as additional sources of information. Conclusion: The results of this survey indicate knowledge gaps in patients with breast cancer, specifically regarding genomic testing to tailor therapy, and the role of ESR1. In addition, QOL of life issues remain an area of unmet need. The results from this survey underscores breast cancer patients’ desire for information related to new treatments in development, discussions with their provider specific to QOL, and how to manage side effects from therapy. Providing patient education tools for providers and patient advocacy organizations that includes information on tumor genomics, treatment options, and side effect management is of utmost importance. Support: Sermonix Pharmaceuticals Citation Format: Hope S. Rugo, Kelly Shanahan, Elizabeth Attias, Miriam Portman, Jenna Gencarelli. Patient knowledge, attitudes and perceptions regarding breast cancer biomarkers, testing, and quality of life [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-28.