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Treatment Decision Making in Early-Stage Breast Cancer: Should Surgeons Match Patients’ Desired Level of Involvement?

From the Division of General Internal Medicine (Section on Health Services and Policy Research), Department of Medicine, Brigham and Women’s Hospital; Department of Health Care Policy, Harvard Medical School; Department of Adult Oncology, Dana-Farber Cancer Institute, Boston, MA; and Healthcare Education and Research Foundation, Inc, St Paul, MN.

Address reprint requests to Nancy L. Keating, MD, MPH, Department of Health Care Policy, Harvard Medical School, 180 Longwood Ave, Boston, MA 02115; email: keating{at}hcp.med.harvard.edu

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
PURPOSE: To describe desired and actual roles in treatment decision making among patients with early-stage breast cancer, identify how often patients’ actual roles matched their desired roles, and examine whether matching of actual and desired roles was associated with type of treatment received and satisfaction.

PATIENTS AND METHODS: We surveyed 1,081 women (response, 70%) diagnosed with early-stage breast cancer in Massachusetts or Minnesota about their desired and actual roles in treatment decision making with their surgeon and used logistic regression to assess whether matching of actual to desired roles was associated with type of surgery and satisfaction.

RESULTS: Most patients (64%) desired a collaborative role in decision making, but only 33% reported actually having such a collaborative role when they discussed treatments with their surgeons. Overall, 49% of women reported an actual role that matched the desired role they reported, 25% had a less active role than desired, and 26% had a more active role than desired. In adjusted analyses, patients whose reported actual role matched their desired role were no more likely than others to undergo breast-conserving surgery (P > .2), but these women were more satisfied with their treatment choice (83.5% very satisfied; reference) than those whose role was less active than desired (72.9% very satisfied; P = .02) or more active than desired (72.2% very satisfied; P = .005).

CONCLUSION: Only approximately half of patients reported an actual role in decision making that matched the desired role they reported. These patients were more satisfied with their treatment choice than other patients, suggesting that women with early-stage breast cancer may benefit from surgeons’ efforts to identify their preferences for participation in decisions and tailor the decision-making process to them.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
OVER RECENT decades, the practice of medicine has become less authoritarian and more patient-centered, due in part to increasing respect for patients’ autonomy and the belief that medical care should be responsive to patients’ preferences and needs.¹ Supporting this shift are data suggesting that patients who are more active participants in their care may have better health outcomes.^2-7 As a result, there is a widespread expectation that patients will benefit from actively participating in decision making. However, patients vary in their preferences for participation in treatment decisions. Although most patients desire information about treatment options,^8-12 many prefer a passive or collaborative role to an active role in making treatment decisions,^8,12-16 particularly patients who are more seriously ill.^{8-11,13,14,16} Individualizing treatment discussions to patients’ preferred decision-making styles rather than encouraging more decision-making autonomy may maximize outcomes for such patients.

Decisions about surgical treatment of breast cancer provide an opportunity to examine decision-making roles among patients with serious illness, because most women who are diagnosed with early-stage breast cancer are candidates both for breast-conserving surgery and mastectomy, two treatments with equivalent survival.^17-20 A prior study of treatment decision making among breast cancer patients confirmed that preferred roles vary (22% desired to select their own cancer treatment, 44% desired to select their treatment collaboratively with their physician, and 34% desired to delegate this decision to their physician).¹⁵ More important, only 42% of women had achieved their desired level of participation in making decisions about their surgical treatment.¹⁵ Although some authors have suggested that patients may benefit from physicians’ efforts to match patients’ desired level of participation in treatment decision making,^7,21,22 it is not known whether such benefits exist.

In this study, we surveyed women diagnosed with early-stage breast cancer to understand treatment decision making with their surgeons. Our goals were to (1) describe patients’ desired and actual roles in decision making with their surgeons and identify how often their actual roles matched their desired roles, and (2) examine whether patients whose actual role matched their desired role differed from other patients with respect to type of surgery received and satisfaction.

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
Sample
We identified all patients diagnosed with histologically confirmed stage I or II breast cancer at 17 hospitals in Massachusetts between September 1993 and May 1995 and those diagnosed at 30 hospitals in Minnesota during 1993. The hospitals in Massachusetts were randomly selected. The hospitals in Minnesota were participants in the Minnesota Clinical Comparison and Assessment Project, a quality improvement project administered by the Healthcare Education and Research Foundation (St Paul, MN). These hospitals were located throughout the state and represented approximately two thirds of Minnesota’s hospital beds. The methods have been previously described in detail.^23,24

Data Collection
Experienced reviewers abstracted medical record data for each patient from the site of primary surgical therapy a minimum of 10 weeks after surgery to maximize complete documentation of surgical treatments. We documented type of surgery, coded as mastectomy (modified radical mastectomy, radical mastectomy, total mastectomy, or subcutaneous mastectomy) or breast-conserving surgery (partial mastectomy, segmental mastectomy, lumpectomy, quadrantectomy, tylectomy, wedge resection, or excisional biopsy). We documented tumor type and tumor-node-metastasis stage and used the Index of Coexistent Disease to classify severity of comorbid disease.^25,26 We also collected patient age and insurance status.

We conducted a 30-minute telephone interview with patients a median of 92 days after primary surgery (range, 34 to 398 days; 90% of the interviews were completed within 180 days). We assessed patients’ desired role in decision making by asking them to select the statement that best described how they like to make decisions about their medical treatment using an instrument developed for a nationwide survey for the President’s Commission for the Study of Ethical Problems in Medicine.²⁷ Response options included "the doctor decides what should be done and does it" (Desired Role–A), "the doctor presents his or her recommendations to you to accept or reject" (Desired Role–B), "the doctor discusses alternatives with you and the two of you decide together how to proceed" (Desired Role–C), or "the doctor presents all available options and allows you to decide" (Desired Role–D). Patients rated their satisfaction with their choice of treatment using a five-point Likert scale ranging from very satisfied to very dissatisfied and indicated how strongly they agreed (on a five-point Likert scale) that they received enough information to make their decisions about surgery and radiation therapy. They also provided demographic information about race, living arrangement, education, and income.

Patients also indicated the name and specialty of the three physicians whom they considered most important in helping to choose their treatments, and from among these physicians, we inquired about treatment decision making with their surgeon. If more than one surgeon was mentioned, we examined decision making with the first surgeon mentioned. Patients selected the statement that best described how treatment decisions with this surgeon were made by indicating whether he/she "decided what should be done and did it" (Actual Role–A), "presented his/her recommendations to you to accept or reject" (Actual Role–B), "discussed alternatives with you and the two of you decided together how to proceed" (Actual Role–C), or "presented all available options and allowed you to decide" (Actual Role–D).

We obtained information on hospital size, presence of a radiation facility, and presence of a cancer program from the American Hospital Association.²⁸ We obtained information about each surgeon’s sex, board certification, and year of medical school graduation from Folio Associates, Inc (Boston, MA), and the Healthcare Education and Research Foundation (St. Paul, MN). The study was approved by the Harvard Medical School Committee on Human Studies and participating hospitals.

We identified and abstracted the medical records of 2,559 women with early-stage breast cancer. We interviewed 1,563 women, representing an absolute response rate of 61%. However, after accounting for women whose surgeons did not provide permission for contact, who could not be located, who were unavailable when study personnel offered participation, and who had language difficulties, the response rate was 70.2%. Those interviewed were younger (P < .001), had fewer comorbidities (P < .001), and were more often health maintenance organization enrollees (P < .05) than those not interviewed, but the two groups had similar rates of breast-conserving surgery (P > .2). We excluded 360 women who were not eligible for both breast-conserving surgery and mastectomy because we wanted to study decision making among women who had a choice of surgical treatments. Women were ineligible for breast-conserving surgery if they had previous breast-conserving surgery on the same breast; prior radiation therapy; a tumor located centrally, subareolar, or involving the nipple/areola; a tumor too large relative to the size of the breast; a multifocal or multicentric tumor; more than one tumor; diffuse microcalcifications; a cosmetic result expected to be unacceptable; collagen vascular disease; or were pregnant at diagnosis.²⁹ Finally, we excluded women who did not identify a surgeon as one of the three most important physicians they saw (n = 49) and women lacking data about their actual role when making decisions with their surgeon (n = 64) or their desired role in decisions (n = 9), leaving a sample of 1,081 women.

Analysis
We first described patients’ desired and actual roles in decision making. We then categorized patients’ actual role in decision making as matching their desired role if their reported level of involvement in decisions with their surgeon matched the desired role that they described. Considering that one’s role in decision making can range from very little participation (physicians make all decisions) to complete participation (patients make the decisions), we categorized patients’ roles as less active than desired if their reported actual role with the surgeon was less involved than desired (for example, if a patient reported that her desired role was for the doctor to discuss alternatives with her and the two of them decide together [Desired Role–C], but she reported that the surgeon decided what was to be done and did it [Actual Role–A]). Similarly, we categorized patients’ roles as more active than desired if their reported actual role with their surgeon was more involved than their desired role.

Matching of actual and desired roles in decision making and type of surgery. We compared rates of breast-conserving surgery among women whose actual role matched their desired role in decision making, who had a more active role than desired, and who had a less active role than desired using the ² test. We used logistic regression to examine the association between matching of patients’ actual and desired roles in decision making and type of surgery. Control variables included patient age, race (white, nonwhite), education (less than high school graduate, high school graduate, some college, some postgraduate), annual household income (< $20,000, $20,000 to $40,000, > $40,000), living arrangement (alone, living with others), comorbid illness (none, mild, moderate, severe), stage of disease (stage I, stage II), surgeon’s sex, years since graduation, and board certification, and hospital characteristics, including bed size (< 100 beds, 100 to 249, 250 to 499, > 500), presence of a radiation facility, presence of a cancer program, year of diagnosis, and state. In a second logistic regression model, we also included as a covariate (and report results about) patients’ actual roles in decision making, because this variable was correlated with our main independent variable of interest (for example, a patient cannot have a less active role than desired if she had a very active role) and we wanted to avoid identifying associations explained by patients’ actual roles.

Matching of actual and desired roles in decision making and satisfaction. We compared the proportion of women who reported being very satisfied with their treatment choice among women whose reported actual role matched their desired role in decisions, those who had a more active role than desired, and those who had a less active role than desired using the ² test. We also compared the same groups of women with respect to strongly agreeing that they had enough information about surgery and radiation. We next conducted multivariable analyses to examine the association between decision-making roles and these two satisfaction outcomes. Control variables were as noted for the analyses above. We also controlled for type of surgery and whether women were undergoing treatment for breast cancer at the time of the interview, because we anticipated that these variables might be related to satisfaction. As above, we examined a second set of models for each outcome that also included patients’ actual role in decisions.

Analyses were conducted using SAS statistical software, version 6.12 (SAS Institute, Inc, Cary, NC). We used generalized estimating equations for logistic regression models to account for clustering of patients by surgeon,³⁰ and we calculated rates of the outcomes of interest for our patient population using a standardized regression approach.^31,32 We repeated analyses stratified by state and results were similar. Finally, in a sensitivity analysis, we assessed whether the number of days between surgery and the interview was associated with patients’ reports of desired or actual role or whether the actual role matched the desired role, and found no association, nor did our findings change when we included a variable in the multivariate models to adjust for the number of days between surgery and the interview.

	RESULTS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
The women in our sample had a mean age of 58, 96% were white, 62% had at least some college education, and 24% were living alone. Sample demographics are presented in Table 1.

View larger version (22K): [in this window] [in a new window]   Fig 1. Matching of patients’ desired and actual roles in treatment decision making. Kappa = 0.24.

Finally, Fig 1 shows the proportion of women whose reported actual role matched their desired role (49%), who had a less active role than desired (25%), or who had a more active role than desired (26%).

Matching of Actual and Desired Role in Decision Making and Type of Surgery
In unadjusted analyses, 61.0% of women whose reported actual role in decision making with their surgeon matched their desired role underwent breast-conserving surgery, compared with 67.8% of women who had a less active role than desired and 55.0% who had a more active role than desired (P = .008; Table 2). Results were similar after adjusting for patient, surgeon, and hospital characteristics (data not shown).

Matching of Actual and Desired Role in Decision Making and Satisfaction
Satisfaction at the time of the interview was high, with 78.2% of women very satisfied with their treatment choice and 79.1% strongly agreeing they received enough information about surgery and radiation therapy. In unadjusted analyses, women whose reported actual role in decision making with their surgeon matched their desired role were more likely to be very satisfied with their choice of therapy and to strongly agree that they received enough information about surgery and radiation therapy compared with women who had a less active role than desired or a more active role than desired (both P < .001; Tables 3 and4). Results were similar in adjusted analyses controlling for patient, surgeon, and hospital characteristics (data not shown).

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
In this study, we asked a large cohort of women with early-stage breast cancer to describe their role in making treatment decisions with their surgeon and assessed how often that role matched their desired role in treatment decision making. The majority of women in our cohort desired a collaborative role with their surgeons. However, only half of the women had a role in decision making that matched their desired role, with the other women evenly split between having a less active role than desired and having a more active role than desired. Women whose actual role matched their desired role did not differ from other women in the type of surgery they underwent, but they were significantly more satisfied with their treatment choice and more likely to report that they received enough information about surgery and radiation therapy, even after controlling for patients’ actual role in decision making. Some authors have recommended that physicians individualize treatment discussions with patients to accommodate differing decision-making styles^7,21,22; our study supports such a strategy.

To successfully tailor treatment discussions to patients’ preferred decision-making styles, physicians must first understand patients’ preferences for participating in decision making. Our finding that only half of breast cancer patients reported an actual role in decision making that matched the desired role they reported supports other data demonstrating mismatches in preferred and actual decision making roles.^15,33 Patients may be unable or unwilling to express their desired role, physicians may be poor judges of patients’ preferences, or time constraints may hinder the establishment of adequate rapport between patients and physicians. Although prior data suggest that physicians may overestimate patients’ preferences for involvement in decisions,³³ the surgeons in our sample were as likely to involve patients less than desired as they were to involve them more than desired. Most physicians have little training in communication skills,^34,35 and they may have difficulty eliciting patients’ preferences for participation in decision making. Strategies to enhance communication between patients and providers about patients’ preferred decision-making roles may be useful in these situations. One example is the use of cards that provide illustrated descriptions of five different decision-making roles, ranging from "I prefer to leave all decisions regarding my treatment to my doctor" to "I prefer to make the final decision about which treatment I will receive."³⁶ Before meeting with the physician, patients meet with a nurse, who helps them identify their preferred decision-making role and shares this information with the physician. Recent data have suggested that decision aids may be useful for discussing treatment options with women who desire a collaborative role in decisions.^37,38

Although previous studies have demonstrated benefits of more active participation in care,^2-7 most of these studies were conducted in general medical settings or among patients with chronic illnesses, where patients may prefer more active decision-making roles than patients newly diagnosed with a serious illness.^{8-11,13,14,16} Our findings suggest that recognizing and accepting patients’ preferences for a passive role in decisions may be more appropriate than forcing them to make a decision when they are not comfortable doing so. Other data suggest that being given a choice of treatments may be associated with increased emotional distress, at least in the short term.³⁹

Although we found no benefits to reporting a more active decision-making role in terms of satisfaction, our data did demonstrate that women who reported an active actual role in decisions were more likely than women who reported a passive role to agree that they received enough information about surgery and radiation. Because patients value information regardless of their preferred decision-making styles,^8-12 providing sufficient information may be important even when matching patients’ preferences for passive decision-making roles.

Although matching of actual to desired roles was not associated with type of surgery received, we found that women in our study who reported the most active actual role in decisions were less likely than women who reported passive roles to undergo breast-conserving surgery. Another study³⁷ found that women who used a decision aid to help them make more informed choices about breast cancer surgery were also less likely than other women to undergo breast-conserving surgery. Women who choose mastectomy over breast-conserving surgery most frequently report doing so because they fear that removal of the lump only "will not get it all."²³ These findings suggest that women with more autonomy in their decision may be more likely to choose a procedure that some perceive as more definitive.

Our findings should be interpreted in light of several limitations. First, although we studied care for a large number of women in two geographically distinct states, the generalizability of our findings to other areas and to current practice requires further study. Furthermore, despite good response rates to our survey, women interviewed were somewhat younger and healthier than those not interviewed. We cannot be sure that our findings are generalizable to all women with breast cancer, nor can we exclude the possibility of response bias. Second, we collected information about patients’ desired role in decision making retrospectively. Although prospective collection would have been preferable, the proportion of patients whose actual role matched their desired role in our cohort was similar to that in another report when desired roles were collected prospectively,¹⁵ supporting the validity of these data. Third, patients’ actual roles in decision making are self-reported. Although patients were specifically asked to describe their role with their surgeon, we did not observe the interactions or ask the surgeons to describe the patients’ decision-making roles.

In summary, this study demonstrates that breast cancer patients who reported an actual role in decision making with their surgeon that matched their reported desired role were more satisfied with their treatment choice and more likely to report that they had received as much information as they needed. Although confirmation of our findings in other types of treatment decision-making and examination of longer-term outcomes are necessary, these data suggest that patients may benefit from physicians’ efforts to identify patients’ preferences for participation in decision making and tailor the decision-making process to these preferences. Such efforts will require continued development of tools to assist physicians in identifying patients’ preferences for participation to correct the mismatch between patients’ desired and actual roles in decision making.

	ACKNOWLEDGMENTS

 
Supported by grant nos. CA59408 and CA57755 from the National Cancer Institute, Bethesda, MD.

We thank Yang Xu, MS, for programming assistance and David W. Bates, MD, MS, for helpful comments on an earlier draft of the manuscript.

	NOTES

 
N.L.K. is a recipient of a Doris Duke Clinical Scientist Award.

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Submitted May 23, 2001; accepted December 3, 2001.

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