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Exploring Decision‐Making about Neo‐adjuvant Chemotherapy for Breast Cancer

Neo-adjuvant chemotherapy (NACT) has become a routine treatment option that may be offered as a choice to women with large operable breast cancer, which may add to the burden of an already complex decision-making process. Published data are lacking on women’s involvement preferences in the decision about NACT, and what level of information complexity might reasonably be presented to a patient to achieve the benefits of shared decision-making (1). Here, we report on a study that aimed to understand women’s NACT decision-making process as the first step to better supporting women through this process, so that treatment can be matched with individuals’ personal values and preferences. We interviewed 22 women, identified via the Breast Cancer Network Australia Review and Survey Group, with a past diagnosis of invasive breast cancer, who had been offered either neo-adjuvant or adjuvant chemotherapy, and had completed surgery and chemotherapy. A semi-structured interview guide included questions about demographics; treatments and outcomes; information needs; decision-making preferences; and associated psychological issues. Responses were analyzed using qualitative descriptive methodology to identify overarching themes. Neo-adjuvant chemotherapy was offered to 19 women, accepted by 13 and declined by six. Three women had not been offered NACT. Participants’ age (median 51), metropolitan residential status and high levels of education employment health insurance imply high health literacy. All major breast cancer subtypes were represented, determined by self-report of hormone receptor and HER2 results. Two participants had taken part in a NACT clinical trial. Few women were aware of NACT before the option was raised by their surgeon. Women were not given, and were unable to find, written patient information specific to NACT. The Internet was seen as an unreliable information source, to the extent that many women avoided it. Women were aware of many information sources, but were reluctant to pursue them due to a fear of information overload and increased decisional conflict. In typical medical encounters, most women preferred to have sufficient information available to allow them to be the primary decision maker. However, the majority preferred to leave the decision about NACT to their doctor or, at most, take equal part in making the decision. Reasons included a perceived lack of time for decision-making and information gathering, the complexity of the multiple factors to be considered, and a sense of being overwhelmed by their breast cancer diagnosis. Women were very trusting of their treating clinicians to guide treatment decisions about NACT, which translated into a high level of decisional satisfaction. Trust in clinicians allows women to avoid the burden of decision-making when they are highly vulnerable, and places responsibility for the decision with the clinician. Hillen et al. suggest that women facing a life-threatening condition such as breast cancer have a ‘need for trust’, which underscores the power imbalance between cancer patients and their oncologist (2). Sensitive communication, clear information, and additional support may be needed to effectively share decision-making, if that is what patients prefer. Most women, with better information, would have preferred more control over the decision about NACT. Most women felt that having access to a decision support tool would have helped their decision-making. Patient decision aids have been shown to improve decision-related outcomes such as decisional conflict, patient involvement, knowledge, and satisfaction, without raising anxiety (3). Women with breast cancer who participate actively in decision-making have higher quality of life, physical, and social functioning, and less Address correspondence and reprint requests to: Dr Nicholas Zdenkowski, BMed, Australia and New Zealand Breast Cancer Trials Group, PO Box 155, HRMC, Newcastle, NSW 2310, Australia, or e-mail: nicholas.zdenkowski@anzbctg.org