Abstract P6-12-05: Hear our voices: Dear oncologist, this is what I need you to know
Authors: Kaplan Marina 
Published: March 2020

Background/rationale: Living with metastatic breast cancer (MBC) presents unique and complex clinical, psycho-social and quality of life issues. MBC patient voices need to be heard to ensure high quality healthcare delivery and positive outcomes. Most studies on patient needs, communication preferences and support focus on the early breast cancer setting, and relatively little attention has been given to the needs and experiences of those of us living with MBC. The present qualitative study fills a critical gap in oncology healthcare delivery science by identifying MBC patient needs and preferences, and provides patient-driven solutions that will help health care teams work better with us through open communication, shared decision making and mutual trust.Methods: Using an approach modeled on community based participatory research, this qualitative study was patient led and patient informed. Peer-to-peer networks and in-depth interviews were used to collect insights into what MBC patients want their oncologists to know, what works well in fostering open communication and trust, and suggestions for feasible, actionable enhancements. Requests for input were posted on several social media groups reaching approximately 800 patients living with MBC. Additionally, 36 women and six men living with MBC were invited to participate in one-on-one interviews. A stratified sampling framework was used to identify interview participants to ensure adequate representation by age, race, geography and gender. Results: Ninety-seven women living with MBC shared their input to questions posted on the social media groups, and 32 women and six men participated in interviews. Many respondents recognize and appreciate that their oncologists actively listen, sometimes use shared decision making, and provide high quality care. Several themes and recommendations for enhancing healthcare delivery emerged. Dominant themes included: Delivering scan results without delay; Providing clinical trial information and support early and regularly; Understanding the psychological impact of facing mortality; Thinking outside the box and tailoring treatments to the patient’s unique disease characteristics; Opening the door (carefully) to difficult topics that many patients find hard to bring to their oncologist, such as emotional, cognitive and psychological difficulties, needing counselling, end of life care, relationship issues, sexual dysfunction, infertility. Participants offered a number of practical suggestions for how to effectively integrate the patient voice into clinical care.Conclusions: Including patients’ voices is recognized as a critical component of quality healthcare, leading to mutual trust, better decisions, increased patient satisfaction and improved outcomes. The results from this study provides patient derived guidance on how to incorporate our voices in clinical practice.

Citation Format: Marina Kaplan. Hear our voices: Dear oncologist, this is what I need you to know [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 P6-12-05.