“MY LIVED EXPERIENCES ARE MORE IMPORTANT THAN YOUR PROBABILITIES”: DECISION NARRATIVES IN THE STUDY OF TAMOXIFEN AND RALOXIFENE (STAR)

Purpose:  Patients who need to make a major medical decision are often expected to understand and use probabilistic information well enough to be capable of evaluating a complex set of tradeoffs between the treatment’s risks and benefits.   Much effort has been invested in creating materials to improve decision making in such situations, but patients vary in the extent to which they use probabilistic information even when it is provided to them in a way that is comprehensible.  This study explored decision making, including the use of probabilities, from the perspective of women who were invited to participate in the Study of Tamoxifen and Raloxifene (STAR).

   Methods: We conducted in-depth one-on-one narrative interviews with 20 women who agreed to participate in STAR and 20 women who declined.  The interviewer began with a single open-ended question (“You have done a statistical risk assessment. Can you tell me about that?”) and allowed interviewees to direct the conversation with minimal interviewer interference.  Data were analyzed using an iterative process that included developing summaries of each interview, coding the transcripts, identifying themes, and ensuring validity by presenting and discussing the study in a qualitative research group.

   Results: Interviewees explained their decisions using a framework of lived experiences. They did not indicate that they used probabilistic information to weigh the risks and benefits of treatment.  Rather, their decisions were embedded within experiences encountered throughout their lives. Such lived experiences included, but were not limited to, their family history of breast cancer, their personal history of breast biopsies, and their experiences and assumptions about the potential consequences of taking tamoxifen.  Interviewees also discussed their decisions in the context of the challenges of using population-derived data, such as that used to calculate risk estimates, for making decisions and predicting health outcomes for individuals.

   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.  Recognizing that lay decision-making strategies may be reasonable may facilitate patient-provider communication about this challenging topic.