Co-Creation of Breast Cancer Risk Communication Tools and an Assessment of Risk Factor Awareness: A Qualitative Study of Patients and the Public in India

SIMPLE SUMMARY: The incidence of breast cancer (BC) is increasing worldwide, and India reported 179,790 cases in 2020. It is important to inform people of risk factors and methods for risk management through interactive risk communication techniques. Affordable, easy-to-understand transmedia tools for the communication of BC risk were co-created by a multidisciplinary team of doctors, clinical researchers, epidemiologists, health economists, digital designers, and public representatives. Qualitative in-depth interviews were conducted in regional languages to assess the views of patients, relatives, the public, and health professionals in India of these prototypes. There was low awareness of BC, with some understanding of age and hereditary risk factors but limited knowledge of reproductive factors amongst the general public, patients, and relatives. Participants favored storytelling techniques (animation and comic strips/infographics) to explain complex issues such as genetic risk and testing. Co-created BC risk communication transmedia tools should be used to support informed decision making. ABSTRACT: Background: Low awareness of BC and its associated risk factors causes delays in diagnosis and impacts survival. It is critical to communicate BC risk to patients in a format that they are easily able to understand. Our study aim was to develop easy-to-follow transmedia prototypes to communicate BC risk and evaluate user preferences, alongside exploring awareness of BC and its risk factors. Methods: Prototypes of transmedia tools for risk communication were developed with multidisciplinary input. A qualitative in-depth online interview study was undertaken using a pre-defined topic guide of BC patients (7), their relatives (6), the general public (6), and health professionals (6). Interviews were analyzed using a thematic approach. Findings: Most participants preferred pictographic representations (frequency format) of lifetime risk and risk factors and storytelling using short animations and comic strips (infographics) for communicating genetic risk and testing: “In a short time, they explained it very well, and I liked it”. Suggestions included minimizing technical terminology, decreasing the delivery speed, “two-way dialogue”, and using local “language for different locations”. There was low awareness of BC, with some understanding of age and hereditary risk factors but limited knowledge of reproductive factors. Interpretation: Our findings support use of multiple context-specific multimedia tools in communicating cancer risk in an easy-to-understand way. The preference for storytelling using animations and infographics is a novel finding and should be more widely explored.