Abstract P5-13-10: Recommendations to improve the lived experience of early stage and metastatic breast cancer patients in Canada
Authors: Gordon J , Ammendolea C , Chari N , Armstrong R , Hall W 
Published: May 2019

Introduction: In 2017, the Canadian Breast Cancer Network (CBCN) undertook two surveys of Canadians who have experienced a breast cancer diagnosis to better understand the lived experience of patients and what opportunities exist to improve support for patients, survivors and their families and minimize the impact of this disease. There were 278 people diagnosed with early stage breast cancer, defined as stage I, II or III for the purpose of this report, and 180 people living with metastatic breast cancer, or stage IV breast cancer, who responded to these surveys.

Results: The survey data shows that while patients feel supported and well cared for in certain aspects there are still significant opportunities for improvement. CBCN has identified five overarching factors that could greatly improve health outcomes and the quality of life of Canadians who experience a breast cancer diagnosis.

1. Improved Educational Resources: The quality and availability of patient education has increased over the past couple of decades; however, there are still some patient friendly educational resources including, specific resources for newly diagnosed metastatic breast cancer patients; decision aids that support breast cancer surgery and post-surgery decisions; navigation of financial resources; treatment timelines and recovery expectations; private insurance navigation and information on dying-well.

2. Increased Access to Treatments: This challenge was specifically identified and vocalized by people living with metastatic breast cancer. Efforts need to continue to shorten the drug approval process time, increase equitable access to new medications for all Canadians, and ensure equitable access for take home oral cancer medications.

3. Increased Access to Information: Information available to patients about their health and treatment has increased; however, there is still information that isn't always communicated to patients that would help them make informed decisions about their health. This includes information about breast density, palliative care options and information around clinical trials.

4. Integrated Systemic Supports: The health care system as a whole is responsible for many of the services and supports that patients need to achieve optimal health and manage their breast cancer; however, these supports can be challenging to navigate and are sometimes lacking. Supports that need to be addressed at a systemic level include developing survivorship care plans for early stage patients, patient navigation, communication tools to support general practitioners during the diagnosis process, access to psychosocial professionals and increased Employment Insurance Sickness Benefits.

5. Increased Awareness and Understanding of Metastatic Breast Cancer: A lack of accurate statistics and overall awareness of metastatic breast cancer makes it challenging to truly understand the impact of this disease and also leaves people living with an incurable form of breast cancer feeling isolated and disconnected. Accurate statistics and increased awareness would help further the understanding of the impact of this stage of breast cancer and better support those with it.

Citation Format: Gordon J, Ammendolea C, Chari N, Armstrong R, Hall W. Recommendations to improve the lived experience of early stage and metastatic breast cancer patients in Canada [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P5-13-10.