Involving Patients in the Decision-Making Process regarding Breast Cancer Treatment: Implications for Surgery Utilization

For most of the 20th century, from approximately 1900 to the mid-1970s, over 90% of women with breast cancer were treated with radical mastectomy [1]. Radical mastectomy is an invasive surgery that involves removing the affected breast, as well as the surrounding chest muscle and associated lymph nodes [101]. Since the early 1980s, fueled largely by the advocacy efforts of patients and their families, less invasive surgical options have been developed. Currently, most women with early-stage breast cancer have the option of surgical treatment with modified radical mastectomy (removal of the entire breast) or lumpectomy (removal of the cancer and the immediate surrounding tissue without removing the affected breast) [2–3].

Despite having the choice of two options, lumpectomy – also termed breast conservation surgery – is endorsed by many national groups and is even used as a quality indicator at some institutions [4,5,102–104]. Such recommendations are based largely on concerns that mastectomy rates have not declined as anticipated, given the availability of this less invasive option. For the past 10–15 years, the proportion of women with newly diagnosed breast cancer receiving mastectomy as their initial surgical treatment has remained constant, at approximately 30% [6,105]. There is a pervasive and underlying assumption that if women were better informed regarding, and/or more involved in, their treatment decisions, they would be more likely to choose lumpectomy [7,8]. In fact, in the USA, legislation was passed during the late 1990s in 20 states mandating that surgeons discuss both options with eligible patients [9].

Simply because lumpectomy is an option does not mean all women prefer this surgery and, in fact, there is evidence that this underlying assumption may be faulty. Our research in two large population-based studies found that patients who were more involved in decisions, more often chose mastectomy; this was true across different race/ethnic and socioeconomic groups [10,11]. Our results further suggest that these decisions are also driven by the interplay between surgeons' recommendations and patients' preferences for treatment. While surgeons appear to be making surgical treatment recommendations based on appropriate clinical factors [12], there are patients, particularly those who report being most involved in decision making, who are making conscious decisions to opt for mastectomy to treat their breast cancer.

Owing to the near equivalence of the two surgical treatment options in terms of survival benefit and recurrence risk, surgical treatment for early-stage breast cancer qualifies as a ‘preference-sensitive decision,’ defined as a decision for which there is no one best treatment. In this case, the choice of treatment, or between treatments, should be based on the patient's preferences [13,106]. Despite the preference-sensitive nature of surgical breast cancer treatment decisions, questions continue to be raised concerning whether mastectomy is a ‘good decision’ for women with early-stage breast cancer who would also be candidates for lumpectomy [107,108].

However, categorizing a decision as ‘good’ or ‘bad’ is not straightforward. Therefore, researchers have turned to a definition that considers the quality of the decision. A ‘high-quality decision’ is defined as one that is based on complete and accurate information regarding the treatment risks and benefits, and is consistent with the decision-maker's underlying values [14,15]. These two elements can be measured separately and the resulting decision can be deemed one of high quality or not, thereby avoiding trying to subjectively classify decisions as being good or bad.

Research from our team and others can be used to provide further insight into whether surgical breast cancer treatment decisions can be considered high-quality decisions. In addition to finding that more patient involvement was associated with choice of mastectomy, we also found that mastectomy choices were based on concerns regarding recurrence and radiation [10]. In other words, women with greater concerns regarding these issues chose the surgery that they thought would reduce the likelihood of having to deal with these concerns. In fact, recent data indicate that the risk for local recurrence for mastectomy-treated patients is not significantly higher than that for lumpectomy-treated patients [16]. In addition, there is a small group of women for whom postmastectomy radiation may improve survival [17]; thus, surgical treatment with mastectomy does not always result in avoiding radiation therapy. In another large population-based sample, we also found that knowledge concerning survival benefit and recurrence risk among treated patients was low [18], and was especially low among racial/ethnic minorities compared with white patients. Others have found similarly low knowledge concerning treatments among breast cancer patients [19] and have found that many patients desire more information regarding their treatment decisions [20]. These results suggest that some women may not be making high-quality decisions, since in some cases they are making their surgical treatment choice based on an inaccurate understanding of these risks.

Determining whether a final decision is consistent with patient preferences is more difficult. Proxy measures of this association have been used, such as satisfaction with decisions and/or regret over decisions some time later. We found that less acculturated Latinas – generally those who prefer to speak Spanish – were those who were most dissatisfied with their surgical treatment decision-making process and expressed the most regret [21]. This was also the group that reported a strong desire for more information regarding treatment issues, despite having received the same amount of information as their counterparts [20]. A recent study by Collins and colleagues provides some of the first evidence that women are making surgical treatment choices based on their preferences, such as the preference to avoid radiation or to retain one's natural breast [15]. These results underscore the importance of ensuring that preference-based decision making is guided by an accurate understanding of the attributes of the treatments that are being considered.

Therefore, involving patients in their breast cancer surgical treatment decisions is necessary but not sufficient to ensure high-quality decisions. Our results would suggest that greater patient involvement leads the patient choosing mastectomy; however, this choice may be based on inaccurate information and may not be consistent with patients' true underlying preferences. Thus, pairing greater involvement with delivery of accurate knowledge concerning surgical treatment options, as well as assistance with preference clarification, could lead some patients to choose breast conservation surgery. The goal of interventions in surgical breast cancer treatment decision making should not be to increase the use of breast conservation surgery but rather to ensure women are making high-quality decisions. More ‘high-quality’ choices could, in turn, result in patients reporting greater satisfaction with the decision-making process and less regret over their decisions, especially among racial/ethnic minorities and less acculturated patients. There may also exist factors that are distinct from knowledge and preference-concordance that need to be considered in defining ‘high-quality decisions’. The views of significant others, family and friends [10,22], as well as the recommendations of healthcare providers, clearly contribute to decision-making outcomes. There is clear evidence that patients do not all want to be ‘very involved’ in decision making [23,24], and thus the influence of others may play a greater or lesser role in different decision-making scenarios. The ultimate goal is to ensure patients are informed and involved to some extent, as well as satisfied with their decision-making process. Further research is needed in order to the explore methods for ensuring women can make high-quality decisions regarding the surgical treatment of breast cancer. Only then will we be able to determine whether improving the quality of these decisions translates into mastectomy rates that are lower, or possibly higher, than those observed today. As noted recently by a breast cancer patient, “We live in a society where we patients are told to be proactive in making our treatment decisions, that we're responsible for taking care of our health. Is it any wonder that so many of us choose to be as aggressive as possible when addressing this disease? Don't shake your head in wonder at our ‘preferences,’ however irrational they might seem, until you've walked in our shoes.”