Abstract P3-15-04: How can we help: The needs of those seeking breast cancer information and support from a cancer patient advocacy organization in Brazil
Authors: de Camargo Barros Luciana Holtz , Siqueira Anna Carolina Arena , Kruse Meredith , Marques dos Santos André , Neumann Lycia TramujasVasconcellos 
Published: March 2022

Introduction Oncoguia, founded in 2009, is a cancer patient advocacy organization in Brazil that provides information and assistance to patients and families through programs, such as the National Support Program for Patients with Cancer, Canal Ligue Câncer. Launched in 2012, Canal Ligue Câncer is a toll-free hotline that offers support and personalized guidance about early detection, diagnosis, and treatment of cancer, navigating the healthcare system, and patients’ rights. The objective of this research was to conduct an analysis of the Canal Ligue Câncer database to better understand the needs of callers seeking information about breast cancer. Methods In this cross-sectional study, we retrospectively analyzed descriptive data from the Canal Ligue Câncer database (2013-2019). This data was collected by trained attendants who used a conversational, semi-structured script to assist callers, details of which are recorded in the database. Results A total of 11,137 calls were registered in the Canal Ligue Câncer database from 2013-2019. Callers requested information related to breast cancer (34%) more than any other cancer. This analysis considered 3,695 of these records; 3,072 (83%) came from cancer patients and 623 (17%) from family members, representing all 27 states of Brazil, predominantly from São Paulo (50%). At the time of the call, more than half (57%) of patients were actively in treatment, of which 41% were receiving chemotherapy, 23% hormone therapy, 9% had surgery, and 8% radiotherapy. These patients accessed their healthcare services through private health plans (48%) or the Brazilian public health system (46%). More than 1 in every 4 (29%) records described an advanced breast cancer diagnosis; 27% of which had advanced cancer at first diagnosis. Many (25%) indicated that breast cancer treatment affected the daily life of the patient. The most commonly impacted areas were related to emotional health (36%), work (22%), finances (16%), self-esteem (10%), and family (5%). The main motives for contact were to seek assistance in the realization of patients’ rights (57%), learn more about Oncoguia (16%), ask questions or report access barriers to diagnostic, treatment, and care services throughout each stage of the patient journey (15%), and request information about quality of life support (8%). Conclusion Oncoguia is a leading cancer patient advocacy organization in Brazil. Canal Ligue Câncer assists callers throughout the country who are seeking information about cancer through empathetic, active listening and offers easy-to-understand information and guidance to help callers overcome challenges. The aggregated data of the Canal Ligue Câncer database highlights trends and provides an important snapshot of common questions and challenges of the larger cancer community, which inform Oncoguia’s health education campaigns and advocacy initiatives. Our analysis demonstrated not only do breast cancer patients need information and assistance to navigate the healthcare and legal systems and to manage the impact of cancer in their lives, but support is also requested by family members. There is also a particularly high demand for information related to patients’ rights, which in Brazil often relates to the Law of 60 Days that guarantees patients begin treatment through the Brazilian public health system no more than 60 days after diagnosis. Further analyses will consider longitudinal trends and changes in the characteristics of callers, their questions, and challenges.

Citation Format: Luciana Holtz de Camargo Barros, Anna Carolina Arena Siqueira, Meredith Kruse, André Marques dos Santos, Lycia TramujasVasconcellos Neumann. How can we help: The needs of those seeking breast cancer information and support from a cancer patient advocacy organization in Brazil [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P3-15-04.