Patient-reported outcomes in metastatic breast cancer: QoL, needs, and expectations of survivors.

Abstract

228 Background: Breast cancer is still a leading cause of death and suffering worldwide. To date, metastatic breast cancer (MBC) is a treatable but incurable disease. Molecular subtypes influence outcomes, with recent increase in median overall survival to 56 months in HER2+ disease (Swain et al NEJM 2015). The success of MBC treatment underscores the increasing importance of discussing quality of life (QoL) and patients’ needs. A survey evaluating patient-reported outcomes was carried out in a Brazilian center with the aim of evaluating patient’s QoL, needs and expectations. Methods: In this IRB approved study, MBC patients were selected from clinical database for phone interviews. During the call, verbal consent was obtained and recorded. Patients answered a standardized questionnaire containing 28 questions about their experience with MBC. RedCap database was created with data from interviews for further analysis. Results: A total of 94 patients with MBC were initially screened. From these, 50 were interviewed (24 deceased, 6 declined and 14 had technical problems). Patient’s age ranged from 31-87y. In 44% family income decreased after MBC diagnosis. Median time from diagnosis of MBC to interview was 62 months (range 1-274 months). Most patients (86%) kept themselves informed about MBC; main sources being doctors (100%), internet (76%), media (71%), other patients (54%), and family (48%). Only 6% didn’t know what MBC meant. Majority were on therapy: chemotherapy/injectables (54%), oral medication (36%), and radiation (2%). Most (86%) preferred follow up by a multidisciplinary team, and 18% would prefer exclusive MBC clinics. Only 6% accepted the label “metastatic”. Less popular labels were “advanced disease” (6%), “recurred” (4%), “palliative” (4%), or “disseminated” (0%). They preferred this disease phase be called “controlled disease” (50%) or “chronic disease” (28%). Conclusions: The main sources of information about MBC for patients are the internet and their providers. In this center, communication between providers, policy makers and MBC patients could potentially be improved with terminology changes, since patients would prefer the metastatic phase of their disease be called “Controlled Disease”.