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Journal of Clinical Oncology, Vol 24, No 21 (July 20), 2006: pp. 3367-3373 © 2006 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.02.7771 Conservation Surgery for Breast Cancer As the Preferred Choice: A Prospective Analysis
From the Departments of Oncology and Surgery, Community Health Sciences and Surgery, Medicine and Community Health Sciences, and Community Health Sciences and Clinical Neurosciences, University of Calgary; and the Departments of Surgical Oncology and Seniors Health and Palliative Care, Calgary Health Region, Calgary, Alberta, Canada Address reprint requests to Margaret L. Russell, MD, PhD, FRCPC, Department of Community Health Sciences, The University of Calgary, 3330 Hospital Dr NW, Calgary, Alberta, Canada, T2N 4N1; e-mail: mlrussel{at}ucalgary.ca
PURPOSE: To describe the proportion of women who anticipate having breast-conserving surgery (BCS) versus modified radical mastectomy (MRM), the factors they considered when making treatment choices, the degree to which they perceived they had participated in and had control of the treatment decision, and to explore factors associated with type of planned surgery. PATIENTS AND METHODS: Prospective cohort study conducted among patients attending a tertiary care hospital in Alberta, Canada from 1992 to 1995. Participants had a first diagnosis of localized unilateral breast cancer, and were, in the opinions of their surgeons, candidates for either BCS or MRM. RESULTS: Of 157 participants, 71.3% anticipated having BCS and 28.7% anticipated MRM. Referents perceived to play an important role in decision making included self, doctor, and significant other. The two top-ranked items perceived to have influenced treatment choice were doctor's advice and possibility of complete cure. Most women (60%) participated in treatment choice to the degree that they preferred, but only 13.6% received their preferred amount of information. The type of planned surgery was predicted by surgeon, contribution of doctor to choice of treatment, importance of breasts to sexuality, self-efficacy, and concerns about cancer recurrence from a multivariable logistic regression model. CONCLUSION: Both patient and surgeon factors are important predictors of type of planned surgery. There is a gap between women's preferences and actual experiences with regard to information provided and patient participation in treatment choices, with womens desire for more information about their treatment being most prevalent.
Despite clear evidence that local control and survival are equal with both breast conserving (BCS) and modified radical mastectomy operations for breast cancer,1 and that those women who have BCS have superior psychosocial outcomes,2-4 there continues to be substantial variance in BCS rates in several countries.5-7 Variance in the proportions of women who have medical contraindications to BCS8 or those with barriers to healthcare access, such as geographic location9,10, employment status,10 insurance status,11 and hospital characteristics,11 may contribute to these observations. However, BCS rates vary widely within Canada despite the existence of universal publicly funded health care.5,12,13 Other correlates of BCS may be a function of physician preferences5,8 or the preferences of the women themselves.8 A woman's choice to have BCS can be conceptualized to be a planned decision. Thus, the Theory of Planned Behavior14 can be a useful framework for examining BCS choice. The theory suggests that a person's intention to perform a behavior is a function of attitude, perceived control, and subjective norm (perceived pressure from important others/referents to perform the behavior). Attitudes and subjective norms are determined by beliefs. Sociodemographic characteristics such as age or educational attainment determine beliefs. Beliefs that have been identified as salient to the choice of the type of surgery have included fear of breast cancer/cancer recurrence, fear of adjuvant therapy, and to a lesser extent, cosmesis.15 The amount of information received by the patient and the amount of patient involvement in decision making may or may not influence the type of surgery received.16-18 Surgeons have been included among the key referents involved in subjective norms.18 Unfortunately, much of the work in this area has been retrospective or cross-sectional in nature. Thus, it is possible that many of the observed associations might be profoundly affected by the women's postoperative experiences rather than truly being predictors of surgical choice. We addressed this problem by examining the decision-making process prospectively, before surgery should be performed on a consecutive cohort of women who were eligible for both modified radical mastectomy (MRM) and BCS, in a setting where access barriers to type of surgery were minimal. We anticipated that the treatment choice (ie, intention to have either MRM or BCS) would be predicted by subjective norms and that the women's beliefs and that the sociodemographic characteristics of the women (eg, age) would not be associated with treatment choice after taking these factors into account.
Participants were recruited from the practices of academic surgeons affiliated with the Foothills Medical Center (Calgary, Canada), a teaching hospital that is the tertiary care hospital for southern Alberta, Canada, for a prospective study of decision making and quality of life among women with breast cancer. The Conjoint Health Research Ethics Board of the University of Calgary (Calgary, Canada) and the Calgary Health Region approved the study. The analysis in this article addresses the characteristics of the women and their decision-making processes at baseline before surgery but after their consultation with the operating surgeon. Consecutive women aged 18 years or older with a first diagnosis of unilateral localized breast cancer who were considered by their surgeons to be medically eligible to have either BCS or MRM (ie, stage I or stage IIA disease) were invited to participate. After informed consent was obtained, a research nurse conducted a baseline interview during the course of which the type of planned surgery (ie, intention) was elicited and coded on the basis of the operation, regardless of whether or not the women indicated that there was going to be adjuvant therapy, such as radiotherapy, planned in addition to the actual surgery. Participants then completed a set of self-administered questionnaires. The interview addressed a detailed sexual history and an evaluation of personal adjustment, with format and general content as suggested by Ross and Channon-Little.19 The self-administered questionnaires included the Duke-UNC Social Support,20 Center for Epidemiologic Studies Depression scale [CES-D],21 Self Rated Health,22 Index of Relational Satisfaction,23 Index of Sexual Satisfaction,23 Quality of Life Uniscale,24 Affect Balance Scale,25 Self-Efficacy Scale,26 and a questionnaire on decision making about treatment, based on the work of Ward and Griffin27 and Lopchinsky et al.28 This questionnaire asked participants to score (0 = no participation, 10 = made the decision completely) the contribution level of how much a close-ended listing of referents had contributed to the choice of their treatment. Respondents indicated (using visual analog scales) the desired amount of participation in treatment choice and the desired amount of information about treatment options (0 = none, 100 = as much as possible), perceived amount of control about treatment decision (0 = none, 100 = as much as possible), the amount of information received about treatment options (0 = much less than wanted, 100 = much more than wanted), and their certainty that the right decision had been made about treatment (0 = not at all certain, 100 = totally certain). The women also scored a close-ended listing of factors (beliefs) considered in thinking about treatment options (0 = did not think about item at all, 10 = most important thing). Finally there were two open-ended questions: "What treatment options were available to you?" and "What treatment will you have?".
Data were double-entered into a FileMaker Pro database (Santa Clara, CA) and subsequently analyzed using Stata 8.2 statistical software (Stata Corporation, College Station, TX). Continuous factors were dichotomized at the median, except for the CES-D scale which was dichotomized using a clinical cut point of 16.21 In univariate analyses, the proportion of women planning BCS among those who scored below the factor median was compared using
Fewer than 3% of the potential participants were not contacted about the study. Of those eligible for the study, 80% of the participants were enrolled onto the study, 12% could not be reached in time to enroll before surgery, and 8% refused to enroll. There were preoperative data for 160 women. Three women were excluded: one because eligibility was not ascertained until after baseline data had been obtained, one because she did not have breast cancer after biopsy results were obtained, and one because she had undergone a previous surgery for breast cancer. Ten general surgeons cared for the 157 women. Six surgeons cared for seven or fewer women each, compared with 27 to 38 women for each of the other surgeons. Data from these six surgeons were grouped together because individually they had too few outcomes to permit meaningful estimates of proportions of women planning BCS. The decision to group the surgeons was supported by a statistically nonsignificant 2 test (P = .67) comparing the proportion of women planning BCS among the six surgeons.
Patient Characteristics
Type of Surgery Planned A theme of uncertainty regarding planned treatment emerged from the responses to the open-ended questions. Some women indicated simply that they were going to have breast surgery and focused their comments on perceptions of options and uncertainty related to adjuvant therapy. Others explicitly indicated the type of planned surgery. Some women indicated that they were not sure of the planned type of surgery, were undecided, or simply did not know. Most of the women perceived that they truly had options regarding their treatment.
Perceptions of the Referents' Contributions to Decision Making
Preferences for Information and Participation in Decision Making We compared the ratings for the amount of information desired to the amount of information received ("information gap") by taking the difference in scores between the two items. Scores for self contribution to treatment decision were multiplied by 10 so as to be on the same scale as the scores for the desired amount of participation in treatment choices. Congruence between desired and actual participation was assessed by the difference between scores for the two variables ("participation gap"). Women for whom the differences in scores were 0 ± 10 points were classified as having received the desired amounts of information or participation. There was a substantial gap between preference and experience. This was worse for the information gap than for the participation gap. Only 13.6% were satisfied with the amount of information they received, although 60% participated in treatment choice to the degree that they preferred. Notably, a larger proportion of women received less than their preferred amount of information (81%), in contrast to the proportion of women who had more than their preferred amount of participation with respect to treatment choice (27.7%). This pattern was observed regardless of the type of planned surgery. When asked to rate their certainty that the right decision had been made about treatment, the median score was 90, indicating a high degree of presurgical certainty that the right decision had been made. Women engaged in a moderate degree of deliberation before a treatment choice was made; the median score for this item was 77.
Factors Perceived to Influence Treatment Choice
Predictors of Type of Planned Surgery From the univariate analyses, surgeon and the first five factors of those listed in Table 2 had statistically significant associations with the type of planned surgery. In the multivariable analysis, only four factors remained statistically significant, in addition to surgeon (Table 3). The factor "importance of breasts to feelings of being feminine" lost its significance as it was correlated with "importance of breasts to sexuality". Except for the factor "concerns about cancer recurrence score," women who scored at or above the median were more likely to have planned to have BCS in comparison to women who scored below the median. Differences in the proportion of women who planned BCS was observed among surgeons, which was retained after the multivariable analysis (Fig 2). The adjusted proportions ranged from 51.8% to 83.7% (P = .013).
The key predictors of intent to have BCS included surgeon, contribution of doctor to choice of treatment, beliefs about the importance of breasts to sexuality, self efficacy, and concerns (beliefs) about cancer occurrence. These findings are consistent with the Theory of Planned Behavior. After adjusting for these factors in a multivariable analysis, age was not important. A strength of this study is the prospective design. Decision-making data and the decision about planned surgery were obtained after consultation with the surgeon but before actual surgery. Previous work has obtained the information about beliefs and referents important to decision making months to years postoperatively.11,35-37 The retrospective designs of those studies do not permit the establishment of a temporal relationship. In the absence of a clear temporal relationship, such associations might have derived from patient assessment of the outcome of the surgery, rather than vice versa. Although the women identified both doctor and significant others as important referents related to the treatment decision, doctor was the only referent that distinguished between choices of treatment. Beliefs about the possibility of cure, cancer recurrence, and adverse effects/complications of chemotherapy and radiotherapy were perceived by the women to be important influences on treatment choice, but only those related to cancer recurrence were associated with type of planned surgery. Considerations of breast appearance and function were perceived to be much less important to treatment choice than the "complications and cure" factors. However, the only other variables associated with type of planned surgery related to self (self-efficacy, importance of breasts to sexuality) and to doctor (surgeon, contribution of doctor to choice of treatment). The importance of surgeon in decision making validates the frequent finding identified in many retrospective studies.11,36-39 This implies that surgeons' understanding of the disease is also important. To give objective advice, the surgeon must be familiar with the evidence that survival is equal with both procedures. BCS is not associated with higher rates of local recurrence, providing that radiotherapy is included in the treatment program.1 That local recurrence after BCS is not a failure of treatment is counterintuitive to the less knowledgeable surgeon as well as to the patient and undoubtedly affects the surgeon's approach to the patient. Unless surgeons understand and clearly communicate this to patients, women would be influenced to choose MRM over BCS even if told the survival is the same. A number of published reports support this interpretation.39,40 The importance of cure/recurrence has also been observed by others, albeit in studies using retrospective designs.36-38 In both the univariate and the multivariable analyses, the contributions of the breast to sexuality was significant. It is conceivable that sociodemographic characteristics of women might influence their beliefs, and the beliefs that are most salient to decision making. We did not measure the educational attainment of our sample and were thus not able to explore for such an effect. We must also caution that our data have limited generalizability beyond the sample and setting in which they were obtained. Others have reported that women choosing BCS were more active in decision making then those having total mastectomy. This may explain why self efficacy is significantly higher in women choosing BCS,16 as we observed. Although the women in this study considered themselves to be central in the decision making role, it was distressing to see the discrepancy between the amount of information desired and the amount received, regardless of the type of planned surgery. This has also been observed elsewhere.17,41 There was not a good match between the desired versus actual amounts of participation in decision making. More than one quarter of women participated to a greater degree than they would have wished, in contrast to approximately 12% of women who had less than desired participation. We suggest that the surgeon's interpretation of "patient-centered care" made 40% of our patients uncomfortable with their decision-making role. This might adversely affect women's satisfaction with care.17,42 The identification of the surgeon and of women's perception of the contribution of doctor to choice of treatment as major elements in decision-making places the burden on the surgeon to understand this disease and particularly on the implication of local recurrence, as well as to carefully consider the mode of communication between surgeon and patient. This central role in influencing women's choice of treatment must be recognized by all who perform breast surgery. The surgeon must also recognize that in approximately three quarters of women, the breast is an integral part of their perception of their sexuality. Although patients may temporarily discount this around the time of breast cancer diagnosis, it provides additional justification for breast conservation beyond the equivalence of survival and recurrence rates. Finally, the entire care team must focus on providing information and opportunities for participation in decision making that match those preferred by the patient. "One size" most definitely does not suit all! Both patient and surgeon factors are important predictors of the type of planned surgery. There is a gap between the women's preferences and actual experiences for the provision of information and participation in treatment; and this gap seems to be worse for information than for participation, highlighting the impact of the surgeon on type of surgery planned for women who are eligible for BCS. The implementation of educational strategies to reduce what might be unknowing bias by the surgeon and to improve communication between women and their surgeons should improve the proportions of eligible women who receive BCS. Such a communication process might influence decision making by affecting beliefs about cancer recurrence or by increasing women's perceived control over choice of therapy.
The authors indicated no potential conflicts of interest.
Supported by the Canadian Breast Cancer Research Initiative. M.E. is supported by a Senior Health Scholar Award from the Alberta Heritage Foundation for Medical Research. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2006 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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