Bottom-up approach: soliciting participants’ input for developing a digital platform to support cancer coping and family communication about hereditary cancer risks in Switzerland and Korea

Background In Hereditary Breast and Ovarian Cancer (HBOC) as well as in Lynch syndrome (LS), communication of genetic risk among families is crucial for the prevention and the early detection of cancer. According to Swiss laws, individuals identified with a pathogenic variant have the sole responsibility to share information about test results to relatives. However, empirical evidence shows that up to 50% of blood relatives of mutation carriers are unaware of potential benefits of genetic testing, raising the question of barriers and facilitators in family communication about genetic risk of cancer. Starting from the assumption that genetic information proceeds along a communication chain from the healthcare provider to probands up to relatives, this study explores the challenges linked to communication about genetic risk along this chain, paying particular attention to the influence of mutation carrier-provider communication on patient-family communication. Method A qualitative study is currently being conducted across three linguistic regions of Switzerland in the frame of the CASCADE study, a research project whose aim is to investigate the experience and the needs of a cohort of HBOC or LS mutation carriers. Face-to-face, online focus groups and in-depth interviews are presently ongoing with a diversified sample of HBOC mutation carriers (male/female, affected/not affected with cancer). Interviews are video and/or audio recorded, transcribed and inductively analyzed by a multilingual and interdisciplinary qualitative research team, exploring potential cultural interpretations, risk perceptions, lay theories and personal reasons (not) to communicate genetic test results. Expected outcome Understanding the challenges along the communication chain regarding hereditary cancer will be useful to 1) increase our knowledge about how to enhance coping around HBOC risk and how to address family communication in genetic services and 2) develop a digital platform to support coping and family communication around genetic cancer risk tailored to mutation carriers’ and blood relatives’ needs. Results Preliminary results of the bottom-up approach suggest the need to build a mutation carriers- centered digital platform providing basic, clear and visual information, access to the latest scientific knowledge and/or medical discoveries about HBOC and LS, and the opportunity to interact with health professionals and/or other mutation carriers. Ongoing study is expected to better illuminate the context of family communication and coping, by further exploring culturally framed influences and addressing the different communication challenges that may arise based on gender, health status and life trajectory of the mutation carrier and/or of the blood relative.