Facing Cancer as a Chronic Disease: Shared Decision-Making at Critical Points in a Long Illness Journey

This is the third installment of a three-part series on decision support tools and shared decision-making. The first two articles centered on the devel­opment of person-centered standards for decision support tools and creating a taxonomy for classifying them.1,2 In this article, we describe how patients with­in three diverse communities who are living with cancer understand and make shared decisions. We used interactive sessions and storytelling in a qualitative setting to assess what matters to patients and caregivers, what language they use to describe their decision-making processes, and how individuals perceive their interactions with their health care providers. We also included qualitative assessment of the regional factors that affect equitable access to health care in the communities included in the study. For the second year of this work, we will combine the quantitative data from the first two articles with more in-depth analysis of patient priorities and values to develop and test prototypes of deci­sion support tools for this target population.