Abstract P6-12-01: Enhancing CSC’s patient- Provider discussion tool for metastatic breast cancer
Authors: Claire Saxton, Maria Gonzalo, Sheri Walters, Jenny Karubian, Amelia Roberts, Alexandra K Zaleta
Journal: Cancer Research (2020)

Abstract Background: In 2006, the Cancer Support Community (CSC) launched its Frankly Speaking About Cancer: Metastatic Breast Cancer (MBC) patient education program. This program raises awareness among patients and caregivers about MBC, current treatment options, managing side effects, psychosocial impacts, and fostering an open dialogue with their health care team. One of the components of this program is a patient-provider discussion tool to help patients better communicate with their health care team. In 2018, CSC revised its MBC patient/provider discussion tool with patient and caregiver input to give more step-by-step help in having deeper conversations with their health care providers about side effects, how those side effects impacted their daily life, and their goals for treatment. The revised discussion tool also provides additional resources on getting support, finances, and information for patients and caregivers. Methods: CSC adapted learnings from CML focus groups on how to improve educational tools and materials. In focus group testing with CML patients, participants requested better step-by-step help to starting discussions with health care providers about side effects, impact on daily life, and goals for treatment that the existing discussion tool helped identify. The existing MBC tool was enhanced to incorporate these features and then tested with MBC patients and caregivers to ensure it represented and met their needs. A two-wave iterative process was used, where qualitative findings from wave 1 were used to inform additional tool enhancements, with the further refined tool evaluated in wave 2. In total, CSC conducted 4 focus groups with 15 MBC patients and 3 caregivers • Wave 1 consisted of 2 focus groups with 6 patients and 3 caregivers. • Wave 2 consisted of 2 focus groups with 9 patients. Focus group participants were asked to give feedback as follows: • Did the tool reflect the top issues MBC patients and caregivers want to discuss with their providers? • Was the tool useful for starting a conversation with their health care providers about managing symptoms and side effects and about treatment goals? • Did the tool reflect how MBC affects patients and caregivers lives? • Could the tool help patients articulate the broader impacts of MBC to their providers? Results: Findings from focus group research indicate that: • Patients regarded the MBC patient-provider tool as useful and liked the different areas of concern that it addresses. • Patients reported that this tool would help them to communicate more effectively with their health care team and prompt discussions about their treatment goals and the impact of MBC on their daily life. They also believed it would help them to seek resources to cope with changes in quality of life related to MBC. • Patients and caregivers viewed the side effects tracking worksheet as an appropriate tool to use at any point during the MBC journey. • Patients and caregivers appreciated the holistic approaches to managing their care in which treatment goals, life goals, and side effects are considered together. Discussion: These findings suggest that the enhanced MBC discussion tool can support patients and caregivers in their interactions with their health care team and empower patients to become active participants in their treatment decisions. Regarding implementation, CSC distributes the tool at no cost to MBC patients and caregivers via its internal network of more than 50 affiliates worldwide, the CancerSupportCommunity.org webpage and social media accounts, the Frankly Speaking About Cancer radio show, and partner patient advocacy groups. We would also like to make patient navigators aware of this tool and allow them to order/download it at no charge to help MBC patients improve their communication with health care providers. Citation Format: Claire Saxton, Maria Gonzalo, Sheri Walters, Jenny Karubian, Amelia Roberts, Alexandra K Zaleta. Enhancing CSC’s patient- Provider discussion tool for metastatic breast cancer [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P6-12-01.