Uncertainty and previvors’ cancer risk management: understanding the decision-making process

Women who test positive for a BRCA genetic mutation, but who have not been diagnosed, or 'previvors,' experience intense, chronological risk-related uncertainty. Women’s risk management medical decisions can be a way to manage their uncertainty, but little is known about how uncertainty informs their decision or how uncertainty is impacted by these medical decisions. Using an uncertainty management theoretical lens, we interviewed 46 previvors about their decision-making process. A thematic analysis revealed two uncertainty management (i.e., risk-reducing) decision-making pathways (preventive surgery and increased surveillance) with each pathway encompassing a three-part process of 1) uncertainty appraisal, 2) medical decision (i.e., uncertainty management strategy), and 3) outcomes. The findings advance theoretical thinking about uncertainty and risk management as an ongoing, distressful chronic experience, and highlight the importance of life-span phenomena in women’s decision-making process. Based on the findings, we constructed a translational tool to aid genetic counselors and previvors facing these medical decisions.