Abstract P1-09-18: Perceptions and gaps of women living with advanced breast cancer: Results from the "Count Us, Know Us, Join Us" online survey in Latin America
Authors: Caleffi Maira 
Published: May 2015

Abstract
Background: Patients with advanced breast cancer (ABC) represent a subgroup of BC patients who have a unique set of needs in their multiprofessional care, as the focus is more concerned with surviving the challenges of the disease, rather than being a survivor. However, little is known about these specific needs. A global Internet-based survey, ‘’Count Us, Know Us, Join Us," was performed to identify and raise awareness of unmet needs of women living with ABC. Herein, the outcomes of respondents in Argentina, Brazil, and Mexico are presented.
Methods: The survey, conducted by Harris Poll between Oct 2012 – March 2013, sponsored by Novartis Oncology, comprised 40 questions to assess respondent demographics and baseline characteristics, diagnosis, metastatic spread of disease, overall health, family history, communication with the health care practitioner (HCP), information sources and resources, treatment, support, quality of life (QOL), satisfaction, emotional state, and economic impact. It was distributed online through locally based patient advocacy groups. Women ≥21 years old with BC that had spread to distant parts of the body beyond the breast and its local lymph nodes (stage IV) were eligible to participate.
Results: Overall, 1,273 participants from 12 countries completed the survey, including 302 respondents from Latin America (n=100, Argentina; n=100, Brazil; n=102 Mexico). Of these, 62% were between 40–59 years old and 59% had metastatic disease at diagnosis. The majority of patients in Brazil (64%) and Mexico (74%), but not Argentina (22%), were very satisfied with the communication they had with their HCP, although overall 74% wanted their HCP to also address their emotional needs. Just over a quarter (28%) felt isolated from the early stage BC community, and two-thirds (67%) felt no one understood what they were going through; 41% experienced a decrease in support from family and friends after being diagnosed. In total, 74% of women felt their QOL had been impaired moderately or strongly following diagnosis. Around half of respondents expressed dissatisfaction with aspects of their mental health, including outlook on life (43%), sense of control over their life (48%), emotional state (50%), and self-esteem (47%) following diagnosis. Moreover, moderate or strong negative impacts on jobs (67%) and finances (71%) were reported by applicable respondents. An impact on work was indicated by 89% of employed women and overall 66% stated that ABC interfered with their ability to work such that they suffered a loss of personal income, with the highest figure for respondents in Mexico (85%).
Conclusions: This survey has identified that ABC has a major impact on many aspects of a sufferer’s life. One of the key findings is the need for a larger psychosocial component in the care of women with ABC in Latin America. Engaging the commitment and collaboration of a multiprofessional care team, caregivers, patient organizations, and governments to improve the quality and breadth of care beyond therapeutic aspects may help to fulfill this unmet need and improve the general well-being of this often invisible patient population.
Citation Format: Maira Caleffi. Perceptions and gaps of women living with advanced breast cancer: Results from the "Count Us, Know Us, Join Us" online survey in Latin America [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 P1-09-18.