As shown in Table 3, nearly all participants reported discussing their surgical options with at least 1 person other than a surgeon; only 3 reported not talking with anyone. Many reported talking with male spouses or partners, 1 or more friends or family members who had experienced breast cancer, and 1 or more friends or family members who had not experienced breast cancer. Smaller percentages reported talking with health professionals, such as a medical oncologist, nurse, therapist, or member of the clergy, and with children. Median and modal values indicate that the “typical” participant talked with 2 or 3 people about the surgical decision.
Also as shown in Table 3, most participants also reported at that least one of the individuals they talked with influenced the decision to some degree. Participants most frequently reported as “influencers” their spouses, family, and friends with a history of breast cancer, followed by health professionals, family, and friends without experience of breast cancer, and children. As indicated by the median and modal values, the “typical” participant’s decision was influenced by 2 people.
On average, spouses, children, family, friends, and health professionals exerted a meaningful degree of influence, with a mean of 3.2 (SD=1.25) on a scale where 3 corresponds with “some influence.” The greatest average influence was reported from spouses/partners (M=3.67, SD=1.36) and children (M=3.65, SD=1.32), followed by family and friends without a history of breast cancer (M=3.48, SD=1.45), family and friends with a history of breast cancer (M=3.43, SD=1.37), and nonsurgeon health professionals (M=2.95, SD=1.41). However, paired-samples t tests revealed that these mean differences were not significant; P-values for all tests exceeded 0.05, indicating that the quantity of influence exerted by individuals in these groups is not statistically different.
As shown in Table 4, there was variation in the type of influence exerted by members of the social network. A 1-way χ2 test indicates that this variation is significant (χ27=106.66, P<0.001). The most common type of influence was experiential, in which a social network member had direct or indirect experience with breast cancer that the participant reported as influence. Although the details reported were diverse, most responses in this category focused on cancer recurrence after lumpectomy or a new contralateral primary after a single mastectomy, family history of cancer, or (less commonly) on satisfaction with CPM. Consequently, the experiential form of influence consists largely of implicit support for CPM (from the patient’s perspective). Moderately (and similarly) frequent forms of influence were (in order of frequency) supporting the patient’s choice, providing information, encouraging CPM (explicitly), being generally supportive, and allowing the patient to talk about the decision. Deciding together and discouraging CPM were infrequent.
Different influence strategies were also more and less frequent in different types of relationships. Discouraging CPM and deciding together occurred too infrequently to be included in a 2-way χ2 analysis (they resulted in multiple cells with very low expected frequencies). The number of influence attempts reported from children was also too small to be treated as a separate category, so influence by children was combined with spouse/partner, as these relationships were both in the participant’s nuclear family and their reported quantity of influence was highly similar. The 2-way χ2 assessing the frequency of the 6 most frequent influence types in the 4 relationship types indicated that the observed variation is significant (χ215=233.04, Cramer V=0.557, P<0.001). As shown in Table 4, family and friends who had experienced breast cancer were most frequently reported to exert experiential influence, whereas health professionals typically provided information. Spouses, children, and family or friends who had not experienced breast cancer tended to use the remaining influence types: talking, encouraging CPM, supporting the patient’s choice, and being generally supportive.
As shown in Table 2, most participants described the surgeon’s behavior during the discussion of surgery as providing options. Relatively few were reported to explicitly encourage or discourage CPM. A 1-way χ2 test indicates that this variation is statistically significant (χ23=117.11, P<0.001). However, somewhat more than half (N=62, 54.9%) of participants reported that their surgeons suggested CPM, whereas somewhat less than half (N=49, 43.4%) said their surgeons did not (2 participants did not answer this question). Only 1 participant reported that the surgeon did not support her choice of CPM; aside from the 2 who did not answer, all other participants believed their surgeons supported their choice.
A minority of participants (N=31, 27.4%) reported some degree of media influence on the decision to elect CPM. Sources of reported influence included television (n=12), Internet (n=11), radio (n=2), and books (n=6). Some participants mentioned specific celebrities and authors such as Christina Applegate, Suzanne Summers, Susan Love, and Dianna Duberry (an Indianapolis news anchor). Others mentioned a range of stories focused on breast cancer topics, including mammograms, diagnosis, mortality, mastectomy, and breast reconstruction.
Prior research on CPM decisions suggests that the increase in this procedure is patient driven rather than physician driven.12–14 The current study provides additional perspective on this phenomenon, contributing evidence that women who chose to pursue CPM elect this surgery, at least in part, with influence and support from members of their social networks, including spouses, children, other family, friends, as well as nonsurgeon health care professionals. Surgeons are regarded as neutral providers of options, and media influence is present, but limited.
Most women in this study talked to multiple social network members about their CPM decision, and reported some degree of influence from those others. Observed differences in the degree of influence between different relational categories did not achieve statistical significance, though this may be a function of sample size. The current data suggest that surgeons need to anticipate the possibility of meaningful influence on their patients’ decisions from others who inhabit a variety of relational roles, ranging from spouses and children to therapists and clergy. These findings suggest a strategy of actively involving these individuals in the information sharing and educational portion of the clinic visit. In their commentary on overtreatment in breast cancer, Katz and Morrow26 state that the outcomes of the various treatment options being considered in the examination room must be clarified. Both they and Angelos et al13 point out that heuristics (gut reactions) and counterfactual thinking drive patient desire for more extensive treatment. With patients’ consent, spouses, partners, and children should be encouraged to attend the discussion of treatment options. They should be actively engaged in the conversation and given the opportunity to ask questions, and ideally transformed from implicit or explicit supporters of CPM (almost 20% in our sample) to providers of accurate information about the utility of the procedure. During their subsequent interactions with the patient, the information these individuals glean from the clinical encounter may help them counter the patient’s gut reactions and anticipated regret.
Efforts to educate members of breast cancer patients’ social networks need not be confined to the examination room. The Pew Research Center’s Internet Project determined as of January 2014 that a majority of US adults use social networking sites such as Facebook. Percentages were 49% for age 65+, 65% for ages 50 to 64, 82% for ages 30 to 49, and 89% for ages 18 to 29 (http://www.pewinternet.org/fact-sheets/social-networking-fact-sheet/). This suggests another strategy to combat unindicated CPM. Material should be developed that provide data on the likelihood of a metachronous contralateral breast cancer, survival as a function of the known cancer, complications, cost of CPM, and long-term satisfaction/dissatisfaction of patients who have undergone reconstruction. This material should be written to address low levels of health and scientific literacy and be presented in a visually appealing electronic format. This would provide patients with an opportunity to share evidence-based information with those they will be consulting with regarding CPM; it would be ideal if this information were shared across the patients’ social networks so as to reach and inform much larger audiences than those accessible through clinical interactions.
The most frequent type of reported influence was experiential, or being influenced by another person’s experience. This type of influence was exerted principally by friends and family who had gone through breast cancer, and consisted largely of reports of cancer recurrence or a new primary breast cancer, and family history of breast cancer. Thus, although coded separately from explicit encouragement of CPM, participants clearly regarded this type of influence as implicit support for the CPM choice. Although it is not surprising that patients sought out family and friends who had gone through breast cancer and had contemplated similar treatment decisions, the fact that their experiences supported the choice of CPM should give us pause. Data suggest that regret regarding treatment decisions for localized breast cancer is low and relatively stable over time for most patients.27,28 Most friends and family members diagnosed with breast cancer would have been treated by breast conservation, and a lesser number by unilateral mastectomy.29 Given that regret regarding treatment decisions is low, we would have expected that these individuals would have voiced satisfaction with their treatment decisions. They may have done so but that is not the message our respondents heard. Local recurrence is a relatively infrequent occurrence,30,31 but the report of this event by the friend or family member or perhaps an anecdotal report of local recurrence in someone the friend/family member is acquainted with seems to have been determinative. This underscores the challenge of combating powerful individual narratives with aggregate statistical data.32 Further research is needed to determine how to accomplish this goal in the context of breast cancer treatment decisions.
Whereas most of our participants reported social network influence on their decisions, mass media influence was reported by a minority. This influence stemmed principally from television or Internet sources; some participants mentioned specific celebrities. Because the CPM decisions reported in this study took place before the publicity surrounding Angelina Jolie and Sandra Lee’s “double mastectomies,” we may have underestimated the current potential for media influence on CPM decisions. However, the data to date indicates that the “Jolie Effect” has been mainly to increase the number of women seeking genetic counseling/BRCA testing.33,34 In all likelihood, the more powerful influence is now taking place through social media, where patients who post about themselves or others choosing CPM combine the impact of personal endorsement with broad reach into their own social networks and beyond. This too speaks to the value of developing accurate and attractive educational materials that are easy to share electronically.
In free-response descriptions of the surgical consultation, participants reported few surgeons as either overtly favoring or opposing CPM, but instead described them as providing options. Analyzing the ethics of surgeon involvement in the CPM decision, Angelos et al13 have framed the challenge facing surgeons as one of respecting patient autonomy versus abdication of responsibility to avoid doing harm. If the recollections of our respondents are accurate, the surgeons presented themselves as having no strong opinion for or against CPM. Although more than half of respondents also reported that their surgeon “suggested” CPM, it has to be assumed that this was in the context of listing the treatment options. It is also unsurprising that participants overwhelmingly reported “support” for the CPM decision, as few surgeons would continue expressing lack of support once they had agreed to perform CPM. Collectively, these findings suggest that surgeons need to be more assertive in conveying their perspective. As Katz and Morrow26 point out, the responsibility for minimizing overtreatment in breast cancer rests largely in the hands of the physician. The National Accreditation Program for Breast Centers 2014 Edition of the Standards Manual states that centers are compliant when they utilize evidence-based breast cancer management guidelines such as those of the NCCN (https:/~/www.facs.org//media/files/quality%20programs/napbc/2014%20napbc%20standards%20manual.ashx). The NCCN guidelines clearly discourage CPM unless the patient is 35 years and below or premenopausal and carrier of a known BRCA1/2 mutation (http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf). Therefore, it is essential that surgeons are perceived to have an opinion, which is to limit CPM to where it is appropriate, and that they can clearly articulate the reasons and evidence for their opinion.
This study exhibits several limitations that should be taken into account when interpreting our findings and conducting future research. Our sample was limited to women whose CPM procedures were conducted in a single geographic region, and who were mostly white. Future research should continue to examine how factors such as race and socioeconomic status affect CPM decisions. In addition, all of our interviewees elected CPM, and we report on a decision that was made as much as 6 years before participation in the study. Over time, choice-supportive bias35 may have resulted in diminished memory of interactions that were less positive toward CPM, skewing participants’ reports in a pro-CPM direction. Addressing this limitation in our work will likely require that researchers study women who are in the process of making their treatment decisions. Comparing women who strongly considered CPM but ultimately chose breast conservation or unilateral mastectomy with those who chose CPM, Hawley et al36 reported that those who chose CPM were significantly more likely to be “very worried about recurrence” (93.8% vs. 80.1%, P=0.001). Nevertheless, 4 out of 5 women who did not choose CPM were still “very worried about recurrence,” but chose another surgical therapy suggesting there were additional considerations affecting their decisions. To guide surgeon’s consultations, future research should also examine why women decide against CPM, who influences them, and especially how women who initially wanted CPM are dissuaded (ethically and compassionately) from pursuing this path.
Identifying the individuals who exert the greatest influence and the type of influence they exert provides an additional opportunity for medical professionals, in general, and surgeons, in particular, to dampen and reverse the increase in CPM. These individuals can be partners in this endeavor by reinforcing the information provided to the patient. From a surgeon’s perspective, it would be far preferable to use information, social networks, and social media to reduce CPMs rather than having the same result imposed by payers.
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Keywords:Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
breast cancer; decision-making; prophylactic; social networks