Abstract P1-15-10: Updating <i>Frankly Speaking About Cancer: Metastatic Breast Cancer</i> educational book
Authors: Claire Saxton, Maria Gonzalo, Amelia Robert, Sheri Walters, Jenny Karubian, 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. Since launching the Frankly Speaking About Cancer: MBC program in 2006, more than 3,800 people have attended our workshops. We have also distributed over 68,000 educational books and worksheets and over 382,000 page views have been recorded for the MBC content on our website. Survey findings from program participants show that 96.5 percent would recommend the program to others. CSC continues working to educate MBC patients and provide them with psychosocial support. In service of this effort, in 2018, CSC revised and enhanced its MBC educational materials with patient and caregiver input to ensure it meet their needs. The revised book also provides additional resources on getting support, finances, and information for patients and caregivers. Methods CSC leveraged findings from MBC patients enrolled in our Cancer Experience Registry® online research initiative, as well as feedback from experts on our MBC Advisory Board, to update the Frankly Speaking About Cancer educational book for people affected by MBC. Focus groups and online community bulletin boards (N=24 adult female MBC patient) were conducted to review the revised book. Participants were asked to give feedback about: ease of understanding; utility for decision making about MBC treatment decision-making and communicating with the health care team; reactions to specific sections and resources included in the book; and suggestions for improvement. Participants’ feedback were recorded and transcribed. The updates and enhancements made to the book were based on the feedback received. Results Findings from focus group research indicate that: • Patients found the FSAC: MBC book to be useful for all of those that have received a MBC diagnosis and their loved ones. • Participants reported that the information provided in the book was easy to understand, and believed that the way the information is displayed supported the messages, which included topics like understanding MBC; communicating with your health care team in an empowered way; questions to ask your doctor; treatment information and treatment decision making, including clinical trials; side effect management; psychosocial support and survivorship; lifestyle management. • Participants suggested the need to include more in-depth information about the financial implications of a MBC diagnosis and treatment and had several suggestions for additional financial resources to be included. Discussion These findings suggest that the enhanced FSAC: MBC book can serve as a unique asset in the realm of cancer patient education, as it covers both cancer treatment and quality of life issues in a manner intended to empower individuals and their families to work in partnership with their health care team and be active participants in their treatment decisions. Regarding implementation, CSC distributes the FSAC: MBC book at no charge to MBC patients and caregivers via its internal network of more than 50 affiliates worldwide, the CancerSupportCommunity.org webpage, the Frankly Speaking About Cancer radio show, and partner patient advocacy groups. We would also like to make patient navigators aware of this educational book and allow them to order/download it, at no charge, to make it available to those impacted by a MBC diagnosis, as well as health care providers. Citation Format: Claire Saxton, Maria Gonzalo, Amelia Robert, Sheri Walters, Jenny Karubian, Alexandra K Zaleta. Updating Frankly Speaking About Cancer: Metastatic Breast Cancer educational book [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 P1-15-10.