My Lived Experiences Are More Important Than Your Probabilities: The Role of Individualized Risk Estimates for Decision Making about Participation in the Study of Tamoxifen and Raloxifene (STAR)

Abstract

Background: Decision-making experts emphasize that understanding and using probabilistic information are important for making informed decisions about medical treatments involving complex risk-benefit tradeoffs. Yet empirical research demonstrates that individuals may not use probabilities when making decisions.

Objectives: To explore decision making and the use of probabilities for decision making from the perspective of women who were risk-eligible to enroll in the Study of Tamoxifen and Raloxifene (STAR).

Methods: We conducted narrative interviews with 20 women who agreed to participate in STAR and 20 women who declined. The project was based on a narrative approach. Analysis included the development of summaries of each narrative, and thematic analysis with developing a coding scheme inductively to code all transcripts to identify emerging themes.

Results: Interviewees explained and embedded their STAR decisions within experiences encountered throughout their lives. Such lived experiences included but were not limited to breast cancer family history, a personal history of breast biopsies, and experiences or assumptions about taking tamoxifen or medicines more generally.

Conclusions: Women's explanations of their decisions about participating in a breast cancer chemoprevention trial were more complex than decision strategies that rely solely on a quantitative risk-benefit analysis of probabilities derived from populations In addition to precise risk information, clinicians and risk communicators should recognize the importance and legitimacy of lived experience in individual decision making.

Keywords: breast cancer risk; chemoprevention; decision making; individualized risk information; lived experiences; narrative interviews.

Figure 1

Example risk assessment result that potential STAR participants received

Figure 2

Risk/Benefit Information Sheet that potential STAR participants received