Treatment decisions for breast carcinoma
Patient preferences and physician perceptions
Patient autonomy and participation in treatment decision making have been encouraged in recent years. However, patients and physicians frequently disagree with regard to the patient's needs and perceptions of their illness. To the authors' knowledge to date only limited research has assessed physicians' perceptions of patients' decision-making preferences. The purpose of the current prospective study was to determine the agreement between patient decision-making preferences and physician perceptions of those preferences.
Women with breast carcinoma who were attending their first outpatient consultation with a breast medical oncologist in a university cancer center were enrolled in the current study. At the end of the consultation, the patients were given a survey regarding their treatment decision-making preferences that included active, shared, and passive roles in decision-making and the patients' attending physicians also were given a survey regarding their perceptions of the patients' decision-making preferences.
Fifty-seven patients had complete data and were analyzed. Approximately 89% of these 57 patients preferred either an active or a shared role in decision making. The agreement between patients and physicians with regard to decision-making preference only occurred in 24 cases (42%). The majority of covariates such as age, education, and income were not found to be statistically significant with regard to patient preferences or to the proportion of patients and physicians who agreed on the patient's preferences.
Women with breast carcinoma appear to have a strong desire for involvement in making decisions regarding their treatment. However, physicians do not appear to be consistently able to predict the decision-making preferences of their patients. Enhanced agreement between patient preferences and physician expectations mostly likely will improve communication and patient satisfaction with the treatment decision-making process. Cancer 2002;94:2076–80. © 2002 American Cancer Society.
Although health care professionals have encouraged patient autonomy and participation in treatment decision-making in recent years, how actively patients want to participate in making decisions concerning their cancer treatment remains controversial.1–10 Moreover, patients and physicians frequently disagree with regard to what the patients' needs and perceptions of their illness are.11 Several studies regarding patient decision-making preferences have been conducted,5, 8–14 but to our knowledge only limited research has assessed physicians' perceptions of patients' decision-making preferences.
If health care professionals are aware of patients' preferences for making treatment decisions, better and more effective communication may be established between patients and physicians. The objectives of the current study were to test the agreement between patients' decision-making preferences and physicians' perceptions of those preferences and to determine how patient preferrences and agreement were associated with patient characteristics such as prior cancer treatment, income, and age.
MATERIALS AND METHODS
Women were eligible for the current study if they were attending their first outpatient consultation with a breast medical oncologist at The University of Texas M. D. Anderson Cancer Center, were age ≥ 18 years, had pathologically confirmed breast carcinoma, presented with a normal cognitive status, and could communicate in English. A total of 60 women were included in the current study, although 3 patients were not included in analyses because they did not answer the question regarding their decision-making preference.
The current prospective study was conducted at the Breast Center Outpatient Clinic between April 2000 and September 2000. The protocol was approved by the institutional review board. All patients registered in the study were required to provide written informed consent.
When a potentially eligible patient was identified by the research nurse, the study was explained to the patient. The attending physician was informed and asked to provide verbal consent for the patient's participation and for his or her own participation in the study. At the end of the consultation, the patient and the attending physician each were given a survey regarding the patient's decision-making preferences regarding treatment. The surveys were based on a previously developed tool.3, 14
Patients were asked to choose from among the following decision-making preferences regarding their treatment plan:
- 1I would prefer to make the treatment decision on my own.
- 2I would prefer to make the decision by myself after hearing my doctor's opinion or input.
- 3I would prefer to make the decision together with my doctor.
- 4I would prefer that my doctor make the decision after talking with me and hearing my opinion.
- 5I would prefer that my doctor make the decision on his or her own.
- 6I don't know.
- 7I prefer not to answer.
Physicians were asked to choose from among the following in assessing a patient's preferences:
- 1I think the patient prefers to make the treatment decision on her own.
- 2I think the patient prefers to make the treatment decision after hearing the physician's opinion or input.
- 3I think the patient prefers to make the treatment decision together with the physician.
- 4I think the patient prefers that the physician make the treatment decision after talking with and hearing the patient's opinion.
- 5I think the patient prefers the physician to make the decision on his or her own.
- 6I don't know.
- 7I prefer not to answer.
The potential roles for the patients in making treatment decisions were an active role (Answers 1 and 2), a shared role (Answer 3), or a passive role (Answers 4 and 5). Instances in which either the patient or the attending physician chose “I don't know” or “I prefer not to answer” were not included in analyses.
Data were collected by the research nurse who had considerable experience in caring for women with breast carcinoma. In addition to the patient and physician surveys, information concerning the patient's age, ethnicity, educational level, occupation, marital status, household income, current stage of breast carcinoma, time since diagnosis of breast carcinoma, and prior treatment for breast carcinoma was collected through interviews with the patient and review of the patient's chart.
A total of 57 patients were included in the analyses. Categoric data such as agreement scores and patient decision-making preferences versus demographic variables were analyzed using chi-square tests. The mean ages of the three patient groups (active role, shared role, and passive role) were compared using analysis of variance; the data were approximately normally distributed. Kappa coefficients (κ) for agreement were calculated. A weighted κ coefficient was calculated from the results of the original preferences (Answers 1–5); a weighted κ coefficient also was calculated on the three regrouped categories (active, shared, and passive roles).
A total of 132 patients were identified through the screening process. Sixty patients were not eligible for the study, among them 27 patients who did not speak English, 7 who had no pathologic confirmation of breast carcinoma, 1 who had a history of severe anxiety, 16 who previously had been treated at the M. D. Anderson Cancer Center, and 9 who did not provide consent because of time constraints. Twelve patients declined to participate in the study. Among the 60 patients enrolled in the current study, 3 patients who chose the answers “I don't know” or “I prefer not to answer” in the survey were not included in analyses.
Table 1 shows patient demographics. Thirty-three of 57 patients (58%) were age ≥ 50 years. Thirty-seven patients (65%) had an educational level of some college or completed college or higher, 40 patients (70%) were married, 28 of the 50 patients who answered the income question (56%) had a household income of at ≤ $50,000, 41 patients (72%) were employed, 43 patients (75%) had received prior cancer treatment, and 51 patients (89%) were non-Hispanic white.
Table 1. Patient Demographics (n = 57)
|Age (yrs) ≤ 50||24||(42)|
| > 50||33||(58)|
| < 12th grade||2||(4)|
| High school graduate||18||(32)|
| ≥ College||37||(65)|
| Not married||17||(30)|
| < $50,000||22||(39)|
| ≥ $50,000||28||(49)|
| Declined to answer||7||(12)|
|Current stage of disease|
|Time since diagnosis (mos)|
| ≤ 2||29||(51)|
| > 2||28||(49)|
| No treatment||14||(25)|
| Any treatment||43||(75)|
Patients preferred an active role in decision making in 13 cases (23%), a shared role in 38 cases (67%), and a passive role in 6 cases (11%), whereas physicians estimated patients' preferences as an active role in 19 cases (33%), a shared role in 27 cases (47%), and a passive role in 11 cases (19%).
Table 2 shows the agreement between patients and physicians. The agreement (in terms of active, shared, and passive role categories) was observed in only 24 of 57 cases (42%). The weighted κ coefficient for Table 2 was low (0.07), and remained low for the three regrouped categories (κ coefficient = 0.08). The upper 95% confidence intervals for these κ coefficients were 0.26 and 0.27, respectively.
Table 2. Agreement between Patient Decision-Making Preferences and Physician Perceptions of Patient Preferences
None of the following covariates were found to be related siginificantly to patient preferences or to the agreement between patients and physicians: age, education, income, race, employment status, marital status, current stage of disease, or time since diagnosis. However, patients who had received prior treatment were more likely to prefer a shared role and less likely to prefer a passive role in decision making compared with those patients who had received no prior treatment (chi-square test = 16.6; P = 0.0003) (Table 3). The proportion of agreement between patients and physicians for patients with or without prior treatment was not significant. The proportions of agreement between patients and physicians differed somewhat between the categories of income (P = 0.10) and age (P = 0.12); patients with a higher income and patients who were younger in age were more likely to be in agreement with their physicians. Finally, although not a statistically significant finding (P = 0.35), patients who preferred to play a more passive role in the decision-making process tended to be older than patients in the active or shared role categories (mean age in the active group, 52 years; mean age in the shared group, 54 years; and mean age in the passive group, 60 years).
Table 3. Covariates of Patient Preferences and Patient/Physician Agreement
|Proportion of agreement between patient and physician||5/14 (36%)||19/43 (44%)||6/22 (27%)||14/28 (50%)||13/24 (54%)||11/33 (33%)|
The two main findings in the current study were that the majority of women with breast carcinoma preferred to make decisions regarding treatment of their breast carcinoma together with their physicians, and that there was poor agreement between the decision-making preferences of the patients and the physicians' perceptions of these preferences.
Women in the current study demonstrated a strong desire to be involved in making decisions regarding their breast carcinoma treatment; 89% of women preferred to play either an active or a shared decision-making role. In contrast, an earlier study of newly diagnosed breast carcinoma patients found that 52% of patients preferred to play a passive role in treatment-decision making.10 The current study finding is in contrast with a recent study of patients with chronic disease (hypertension, diabetes, myocardial infarction, congestive heart failure, and depression) that reported that 69% of patients preferred to leave their medical decisions to their physicians.8 The findings of the current study also are in constrast with an early study conducted by Degner and Sloan3 that found that 59% of newly diagnosed cancer patients preferred their physicians make their treatment decisions for them. Similarly, Sutherland et al.4 reported that 63% of cancer patients in their study preferred to play a passive role in treatment decision-making. However, the findings of the current study were consistent with those from a study of treatment decision-making preferences conducted in 35 women with Stage I and Stage II breast carcinoma, in which 23% of patients preferred to play an active role in the decision-making process, 57% preferred to play a shared role, and 20% preferred to play a passive role.6 In a more recent study, Degner et al.5 found that 22% of women with breast carcinoma wanted to select their own medical treatment, 44% wanted to select their treatment in collaboration with their physicians, and 34% wanted their physicians to make their treatment decisions for them, which supported the current study findings. These findings suggest that women with breast carcinoma want a substantial degree of involvement in making decisions regarding their medical treatment and that patients with cancer may want more involvement than patients with other conditions. In the current study, agreement between patients and physicians with respect to the patients' decision-making preferences occurred only in 24 of 57 cases (42%) and the κ agreement coefficient was low (κ = 0.08). In general, the physicians underestimated the patients' preferences for playing a shared role in the decision-making process. A recent study by Bruera et al.14 of palliative care patients who were assessed by a symptom control and a palliative care specialist found similar results; of 78 cases, 30 (38%) demonstrated agreement between the patients and the physicians in terms of whether patient preferences were observed. However, the patients in the current study appeared to be less passive in their decision making compared with the palliative care patients. Six of 57 patients in the current study (11%) preferred to engage in passive decision making, compared with 13 of 78 patients in the earlier study(17%). Possible reasons for this disparity include differences in the patient populations and a response shift over time.15 As patients become more debilitated they may choose to play a more passive role in decision making. This finding should be evaluated in future studies.
Other factors that may influence patients' decision-making preferences include age and education. Previous studies have suggested that patients who prefer to play a more active role in decision-making are younger1–3, 8, 16–17 and more highly educated than those patients who prefer a shared or passive role.1, 3, 6, 8, 17–19 However, in the current study, the majority of the covariates tested were not found to be statistically significantly related to patients' decision–making preferences, a finding that may result in part from the homogenity of the patients with regard to these covariates. The small sample size is a limitation of the current study. This also may contribute to the lack of effect of patient characteristics on decision-making preference.
The findings of the current study suggest that options that are likely to be unrealistic such as the first option (none of the 57 patients in the current study and only 1 of 78 patients in our previous study14) rarely are chosen by patients. This finding most likely suggests that an acceptable level of autonomy is interpreted by the majority of patients as being a joint decision rather than a completely independent decision-making process.
The approach we used to determine patient preferences has the advantage of being quick and easy to use in a clinical setting. However, this tool may oversimplify the situation and does not provide important background information with regard to why an individual patient has made a particular choice.20, 21 More research is needed to better characterize the complex factors that influence decision-making preferences.
Women with breast carcinoma appear to have a strong desire for involvement in making decisions regarding their treatment. However, physicians frequently are unable to predict patients' decision-making preferences. When physicians' awareness of patients' preferences and expectations is increased, communication between patients and physicians will improve and patient satisfaction with treatment decisions will be enhanced.