Identifying Gaps in Metastatic Breast Cancer Patient Knowledge and Their Communication Experiences With Health Care Professionals and Developing Visually Based Solutions to Overcome Those Gaps
Authors: Beaumont C. Ellsworth , Benjamin C. 
Published: September 2018

Background: Metastatic breast cancer (MBC) is the fifth most common cause of death from cancer globally.1 MBC is incurable and its trajectory complicated. Patients have only a few days to choose treatments after an unexpected diagnosis, and most conversations with health care professionals (HCPs) are oral, a communication method with low retention accuracy (14%).2 Patients and caregivers feel ill prepared and overwhelmed. Yet when visuals are introduced into HCP/patient communication, accurate recall can be as high as 85% for low-literacy populations.2 Aim: Test if visually based communication tools can be used by HCPs to increase MBC patient and caregiver understanding of MBC as incurable, and confidence in making treatment decisions for quality of life. Methods: Survey of MBC patients (n=487) communication experience prior to treatment of Stage IV; interviews with HCPs (n=20) in the clinic to identify communication barriers with patients; empathy role play with HCPs and patients to clarify viewpoints (n=7); analysis of patient materials; in-depth interviews with MBC patients and communication experts (n=12); iterative design process of communication tool prototype with MBC patient group (n=48) and HCPs. Results: Only 1 in 8 patients were educated with visuals during initial discussions with HCPs. Less than half of patients (46%) included HER2 and hormone receptor status when asked to describe their subtype. One-third of patients felt they did not have enough knowledge to participate in decision-making for treatment and 58% of patients felt rushed to start; 71% did not recall discussing goals/hobbies; and just 62% discussed pain and symptom management. HCPs want to deliver difficult news in a clear and empathetic way, reduce repetition, save time educating patients, and have better tools for caregivers; current patient materials are impersonal and overwhelming. Iterative development and testing of the MBC Communication Toolkit prototype with HCPs and patients showed patients understood treatment options more easily with a visual metaphor while HCPs using the prototype said the images were effective for communicating symptoms and treatment options. Conclusion: A visual approach to improving communication between MBC patients and caregivers and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback. Visual tools can help HCPs engage patients with information to enable them to understand their disease, goals, and nature of treatments so they can make informed, appropriate decisions. REFERENCES 1. International Agency for Research on Cancer: Breast cancer: estimated incidence, mortality and prevalence worldwide in 2012. Available at https://globocan.iarc.fr/Pages/fact-sheets_cancer.aspx 2. Houts PS, Witmer JT, Egeth HE, et al: Using pictographs to enhance recall of spoken medical instructions II. Patient Educ Couns 43:231-242, 2001 https://doi.org/10.1016/S0738-3991(00)00171-3