Springer 2006

Breast Cancer Research and Treatment (2006) 99: 35–45 DOI 10.1007/s10549-006-9178-z

Factors affecting patients’ perceptions of choice regarding adjuvant chemotherapy for breast cancer Sylvia J.T. Jansen, Wilma Otten and Anne M. Stiggelbout Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands

Key words: cancer, chemotherapy, decision-making, treatment choice

Summary Introduction. Patients’ perceptions of having had freedom of choice in treatment decision-making are shown to have implications for their quality of life. It is, therefore, important to determine what factors underlie these perceptions. One factor that has been studied is whether or not patients believed that their doctor had offered choice of treatment. However, even when choice is actually offered, patients may still feel that they have no choice. Little attention has been paid to other factors that may contribute to patients’ perceptions of having had no choice. Our purpose was to explore (1) whether early-stage breast cancer patients perceived to have had a choice with regard to adjuvant chemotherapy, and (2) their reasons for having perceived no choice. Patients and methods. The determinants of no choice that we examined were: (1) (preferred) involvement in treatment decision-making, (2) perceived clinical benefits of chemotherapy (e.g., cure), (3) perceived psychological benefits (e.g., less worries), and (4) perception of being able to cope with the side effects. All predictors, as well as patient and clinical characteristics, were entered simultaneously in a multiple logistic regression analysis and nonsignificant predictors were removed step-by-step, until only significant predictors (p<0.05) remained. Because determinants may differ between patients with experience of chemotherapy and those without, both treatment groups were analyzed separately. Results. Four hundred and forty-six patients filled out the questionnaire (62%). Sixty-six percent of patients who had been treated with chemotherapy and 86% of inexperienced patients had perceived no treatment choice. In both treatment groups, patients who preferred a shared role or a passive role in treatment decision-making were statistically significantly more likely to have perceived no treatment choice than patients who preferred an active role. Surprisingly, beliefs about the clinical and psychological benefits of chemotherapy did not influence patients’ perceptions of having had choice of treatment. Conclusion. If we adhere to patient autonomy and shared decision making, we may consider the perception of no treatment choice as a negative outcome of treatment decision-making. However, if this is the result of the patients’ preference for less active involvement in treatment decision-making, the topic of perception of no treatment choice may be viewed in a different light.

Introduction One of the main challenges to patient care in developed health care systems is how to engage patients in their own health care decisions. A topic that has been studied within this domain is whether or not patients have perceived freedom of choice with regard to treatment decision-making, and the impact thereof on quality of life and satisfaction with care received. Patients who perceive that they have decisional control in treatment decision-making may regain a sense of control and mastery over their disease or treatment [1–4], which may ultimately lead to a higher quality of life [1,3–6]. For example, Mandelblatt and coauthors [5]

observed that breast cancer patients who felt that they had no choice of treatment reported significantly more bodily pain, lower mental health scores, and less general satisfaction than women who had perceived a choice of treatment. Because the perception of having had treatment choice may have implications for patients’ quality of life and satisfaction, it is important to determine what factors underlie these perceptions. One factor that has been studied in this context is whether or not the doctor offered choice of treatment. This research pertains not only to studies in which actual choice of treatment was offered (e.g., Deadman et al. [1], Morris and Royle [3], and Al-Ghazal et al. [7]) but also to

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studies in which patients’ perceptions of choice were explored, irrespective of whether or not treatment had actually been offered (e.g., Polsky et al. [6], King et al. [8], Krupat et al. [9]). However, patients’ perceptions of having had choice may not be determined exclusively by whether or not the doctor offered choice of treatment. Patients may still feel that they have no choice despite the fact that choice was actually offered. For example, Charles and coauthors [10] observed in a qualitative study that many earlystage breast cancer patients were preoccupied with avoiding the possibility of disease recurrence and felt that they had no choice but to accept the treatment offered (adjuvant chemotherapy). Clearly, these patients believed that undergoing adjuvant chemotherapy would diminish their chance of disease recurrence and thus would benefit them. In addition, the authors reported that some women felt that they had no choice but to undergo all relevant treatments available in order to reassure themselves that they had done everything possible to fight their cancer, thus providing a psychological reason for the perception of no treatment choice. Similar results were obtained in a qualitative study by Henman and coauthors [11]. In their study, a number of female cancer patients commented that they really had no choice but to choose further treatment in order to live longer. We observed similar findings in a previous qualitative study into the perceptions of patients with earlystage breast and colorectal cancer with regard to the choice for adjuvant chemotherapy [12]. Many patients commented that they did not perceive to have had any choice with regard to treatment with adjuvant chemotherapy. Qualitative analyses of verbatim transcripts of the interviews revealed the importance of the following factors with respect to the perception of having had no choice of treatment: (1) preferred involvement in treatment decision-making (e.g., ‘I don’t think that I have a choice. No, I believe that the doctor knows best what is good for me.’), (2) the belief that chemotherapy will have clinical benefits (e.g., ‘You don’t have any choice: you don’t want to die, or that the disease recurs, so you just do it.’ (3) The belief that chemotherapy will have psychological benefits (e.g., ‘I will think that I am actively contributing to my cure’), and (4) the perception of not being able to cope with the side effects of treatment. Thus, our qualitative results as well as those described by Charles and coauthors [10] and Henman and coauthors [11] suggest that patients’ perceptions of no treatment choice may be influenced by other factors besides the doctor offering choice of treatment to the patient. However, these studies were all small qualitative studies. The purpose of the current study was to assess quantitatively patients’ perceptions of choice regarding treatment with adjuvant chemotherapy and to explore the impact of the above-described determinants on patients’ perceptions of having had choice of chemotherapy treatment.

Patients and methods Patients The Leiden University Medical Center cancer registry identified all patients who had undergone breast surgery for early-stage breast cancer between January 1, 1998 and December 31, 2002, and who did not have distant metastasis at the time of the selection. This procedure yielded the names and addresses of 719 patients. These patients were sent a letter of invitation in which the study was explained. Patients could indicate on a reply sheet whether they wanted to receive the questionnaire and could return this sheet in a prepaid envelope. The questionnaire and a prepaid envelope were sent to patients who responded positively to our request. Patients who did not reply received one reminder. The study was approved by the Medical Ethics Committee of the Leiden University Medical Center. Methods In the questionnaire, we asked patients to provide information on the following characteristics: age, marital status, being a parent, having children living at home, occupational status, and education. Furthermore, patients were questioned about the following clinical and treatment characteristics: date and type of surgery performed (breast-conserving surgery versus mastectomy) and whether or not they had been treated with adjuvant chemotherapy, post-operative radiotherapy, and adjuvant hormonal therapy. Information on tumour stage was provided by the hospital cancer registry. Perceived treatment choice was measured by asking: ‘Do you feel that you had a choice regarding treatment with adjuvant chemotherapy? (yes/no).’ This question followed a question asking whether the patient in fact had been treated with adjuvant chemotherapy. The underlying factors for not having perceived freedom of treatment choice were explored by analyzing patients’ answers to questions that pertained to the categories of potential determinants as described in the Introduction section. The first category of determinants of perceived treatment choice was termed: ‘(preferred) involvement in treatment decision-making.’ We investigated (1) whether patients reported that they had left the choice of treatment with chemotherapy to their doctor, and (2) whether patients believed that they could judge for themselves whether chemotherapy was necessary (Appendix A, statements 1 and 2). Furthermore, patients’ preferences for involvement in treatment decision-making were analyzed by asking patients to select one of five responses to a question assessing preferences for participation in treatment decision-making with regard to adjuvant chemotherapy. The responses described five different roles in decision making that the patient and physician can assume. These range from the patient selecting her/his own treatment (active role) through a collaborative model (shared role) to a scenario where the

Factors affecting perceptions of choice physician alone makes the decision (passive role) (Appendix A, statement 3). The question was based on the ‘Preference for participation in treatment decisions questionnaire’ developed by Sutherland and coauthors [13] and was adapted to refer to adjuvant chemotherapy. Our second category was termed: ‘perceived clinical benefits of chemotherapy.’ We investigated patients’ responses to three statements about the possibility of chemotherapy being beneficial with regard to (1) prolongation of life, (2) risk of recurrence, (3) and chance of cure (Appendix A, statements 4–6). Our third category related to ‘perceived psychological benefits of chemotherapy.’ We investigated patients’ responses to three statements about the possibility that chemotherapy would provide patients with the belief that (1) they are doing everything they can to be cured, (2) they are actively contributing something towards their cure, and (3) they will be less worried about the disease recurring (Appendix A, statements 7–9). Finally, the fourth category, ‘perception of being able to cope with the side effects of treatment,’ was investigated by two statements that differed with regard to the seriousness of the side-effects (Appendix A, statements 10 and 11).

Analysis Patients’ characteristics are shown by means of descriptive methods. Differences in patient characteristics between responders and non-responders were analyzed by means of independent samples t-test (age) and chi-square statistics (all other variables). Note that all subsequent analyses were done separately for patients who had undergone chemotherapy and those who had not, because we feel that these two treatment groups may have very different reasons for not having perceived freedom of treatment choice. In each treatment group, differences in patient characteristics between patients who felt that they had a choice of treatment and those who had not were analyzed by means of chi-square statistics. To be able to include age and ‘time passed since surgery to filling in questionnaire’ as categorical variables in the logistic regression analyses, these variables were both recoded into three categories. With regard to the potential determinants: to facilitate interpretation of the results and to avoid (almost) empty categories, the answering categories ‘strongly agree’ and ‘agree’ were pooled as well as the categories ‘strongly disagree’ and ‘disagree.’ This resulted in three categories: ‘agree,’ ‘neither agree nor disagree,’ and ‘disagree.’ Similarly, we pooled the responses in the category ‘definitely not’ with ‘probably not’ and the responses in the category ‘probably’ with ‘definitely.’ To describe patients’ preferences for participation we pooled the response categories ‘only doctor’ and ‘mainly doctor’ and the response categories ‘only patient’ and ‘mainly patient,’ resulting in three participation roles: passive, shared, and active [14].

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First, we explored for each determinant whether the responses of patients who had perceived to have treatment choice differed from the responses of patients who had perceived no treatment choice by means of univariate chi-square analyses. In the next step, all patient and clinical characteristics and all determinants were entered simultaneously into a multiple logistic regression analysis. Each variable was included as a categorical variable. After running the analysis, the determinant with the lowest non-significant p-value on the Wald test was removed and the analysis was redone. This process was repeated until only determinants were left that had a significant p-value on the Wald test.

Results Description of the patient group Between February and April 2003, 719 patients were asked to participate in the study. One hundred and two patients (14%) indicated that they did not want to receive the questionnaire, five patients (1%) were deceased, four patients were not eligible due to dementia (as indicated by their family), six patients had moved, and 72 patients (10%) did not respond at all. Five hundred and thirty patients (74%) indicated that they wanted to receive the questionnaire. Four hundred and forty-eight questionnaires were returned (85% of 530; 62% of 719). Two patients (0.5%) turned out to be ineligible because data from the cancer registry showed that they had supraclavicular lymph node metastases, which we considered to be a distant metastasis. The 446 patients who returned the questionnaire did not differ from the 271 patients who did not fill in the questionnaire with regard to gender. However, the nonresponders were slightly older (63 versus 60 years, p<0.01) and had experienced adjuvant chemotherapy less frequently (26 versus 38%, p<0.01). One hundred and seventy-five patients (39% of 446) had been treated with chemotherapy. Three of these patients had not answered the choice question. One hundred and sixteen patients (66%) had perceived to have no freedom of treatment choice regarding adjuvant chemotherapy. Characteristics of the two patient groups (choice versus no choice) are presented in Table 1. There were no differences between the two groups with regard to gender (all female), marital status (p=0.61), being a parent (p=0.42), having children living at home (p=0.37), education (p=0.68), work (p=0.78), stage of disease (p=0.76), type of breast surgery (p=0.73), having experienced post-operative radiotherapy (p=0.10), having experienced hormonal therapy (p=0.75), and time passed from surgery to filling in the questionnaire (p=0.08). The groups could not be compared with regard to age because the assumptions of the chi-square test were violated, i.e., 33% of cells had an expected value less than 5 [15]. For this reason, patients in the group from 55 to 65 years and those in the group older

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Table 1. Patient and clinical characteristics of patients who had undergone adjuvant chemotherapy

Table 2. Patient and clinical characteristics of patients who had not been treated by means of adjuvant chemotherapy

Choice

No choice

Choice

No choice

(N=56)

(N=116)

(N=33)

(N=199)

Age

Age

32–54 years

32 (57%)

67 (58%)

32–54 years

7 (21%)

44 (22%)

55–65 years

21 (38%)

46 (39%)

55–65 years

10 (30%)

77 (39%)

66–89 years

3 (5%)

3 (3%)

66–89 years

16 (49%)

78 (39%)

Female gender

56 (100%)

116 (100%)

Female gender

32 (97%)

197 (99%)

47 (84%)

92 (79%)

Married/living

18 (55%)

150 (75%)

(apart) together Widowed/single/divorced

Marital status Married/living

Marital status*

(apart) together Widowed/single/divorced Being a parent

9 (16%) 51 (91%)

24 (21%) 99 (85%)

Having children living at home

27 (48%)

46 (40%)

Education

49 (25%)

28 (85%)

171 (86%)

Having children

4 (12%)

38 (19%)

<10 years

17 (52%)

121 (61%)

10–15 years >15 years

6 (18%) 10 (30%)

38 (19%) 36 (20%)

9 (27%)

58 (29%)

living at home

<10 years

27 (49%)

60 (53%)

10–15 years

17 (31%)

28 (25%)

>15 years

11 (20%)

26 (23%)

30 (54%)

58 (50%)

Having paid work (either part-time or full-time)

15 (45%)

Being a parent

Education

Having paid work

Stage of disease:

(either part-time or full-time) Stage of disease:**

Stage I

6 (11%)

16 (14%)

Stage II

46 (82%)

88 (77%)

Stage I

14 (42%)

147 (74%)

4 (7%)

10 (9%)

Stage II

18 (55%)

45 (23%)

1 (3%)

7 (4%)

Breast-conserving surgery

21 (64%)

166 (84%)

Mastectomy

12 (36%)

32 (16%)

27 (82%)

179 (90%)

19 (58%)

35 (18%)

<2 years

11 (33%)

63 (32%)

‡2 years and <4 years

14 (42%)

94 (47%)

‡4 years and <6 years

8 (24%)

42 (21%)

Stage III

Stage III

Type of surgery performed: Breast-conserving surgery Mastectomy Having experienced post-operative

31 (55%) 25 (45%)

69 (60%) 47 (40%)

46 (82%)

107 (92%)

radiotherapy Having experienced

38 (68%)

83 (72%)

hormonal therapy

Type of surgery performed:**

Having experienced post-operative radiotherapy Having experienced

Time from surgery

hormonal therapy**

to filling in questionnaire <2 years ‡2 years and <4 years

12 (21%) 26 (46%)

26 (22%) 70 (56%)

‡4 years and <6 years

18 (32%)

20 (22%)

than 65 years were pooled in the chi-square analysis and in the upcoming logistic regression analysis. No differences were observed with regard to age in the chi-square analysis (p=1.00). Two hundred and seventy-one patients had not been treated with chemotherapy. Thirty-nine of these patients (14%) had not answered the choice question. One hundred and ninety-nine patients (86%) indicated that they had not perceived freedom of treatment choice. Characteristics of the two patient groups (choice versus no choice) are presented in Table 2. There were no differences between the two groups with regard to age (p=0.56), being a parent (p=1.00), having children living at home (p=0.47), education (p=0.29), work (p=0.99), and time passed from surgery to filling in the questionnaire (p=0.86). However, patients who had

Time from surgery to filling in questionnaire

Note: *Significant difference between groups (p<0.05); **Significant difference between groups (p<0.01).

perceived no treatment choice were more often married or living together (p<0.05), had more often less advanced disease (Stage I) (p<0.01), had more often been treated by means of breast-conserving surgery (p<0.01), and had less often been treated with adjuvant hormonal therapy (p<0.01). The groups could not be compared with regard to gender because the assumptions of the chi-square test were violated (i.e., 50% of cells had an expected value less than 5 [15]). Note that for this reason, gender will not be incorporated in the logistic regression analysis in the group of patients who had not been treated with adjuvant chemotherapy. Instead, male respondents (n=3) will be deleted from these analyses.

Maybe, maybe not

6 (11%)

‘... severe nausea, severe fatigue, and severe hair ...’

12 (23%)

17 (31%)

–

15 (28%) 9 (17%)

8 (15%)

35 (66%)

50 (96%)

23 (43%)

49 (92%)

55 (100%)

36 (67%) 45 (83%)

45 (85%)

Definitely/probably

Passive 10 (20%)

8 (15%)

21 (40%)

11 (10%)

6 (5%)

31 (27%)

5 (4%)

–

8 (7%) –

–

Definitely/probably not

Active 13 (11%)

96 (87%)

22 (20%)

21 (19%)

36 (32%)

1 (1%)

36 (32%) 19 (17%)

21 (19%)

Maybe, maybe not

Shared 54 (47%)

9 (8%)

17 (15%)

nor disagree

Neither agree

81 (72%)

104 (95%)

46 (41%)

108 (96%)

113 (99%)

69 (61%) 94 (83%)

92 (81%)

Definitely/probably

Passive 47 (41%)

6 (5%)

72 (65%)

Agree

(Strongly)

*The number of responses varies for every statement due to missing answers. a Response categories ‘definitely/probably not’ and ‘maybe/maybe not’ were pooled for the chi-square analysis because more than 20% of the cells have an expected count of less than five. b Chi-square could not be calculated.

2 (4%)

‘... mild nausea, mild fatigue, and mild hair loss?’

Being able to cope with the side-effects of treatment

14 (26%)

4 (8%)

‘... I will think that I am actively contributing ...’

‘... I will be less worried about the disease ...’

–

3 (6%) –

‘... I believe that I will have done everything I ...’

Perceived psychological benefits

‘... the risk of the disease coming back will be less.’ ‘... my chance of cure will be greater.’

–

Definitely/probably not

Perceived clinical benefits

‘... my life will be prolonged.’

Shared 22 (43%)

Active 19 (37%)

Patients’ preferred involvement in decision-making Number of patients (%)

7 (13%)

39 (72%)

‘I can judge for myself whether adjuvant ...’

9 (17%)

22 (42%)

‘I have left the choice of whether I have ...’

(Preferred) Involvement in treatment decision-making

Disagree

(Strongly)

nor disagree

Disagree

Agree

Neither agree

(Strongly)

(Strongly)

No Choice (N=116)*

Choice (N=56)*

Table 3. Frequencies of responses of patients who had undergone adjuvant chemotherapy

p=0.76

p=0.96a

p=0.98

p=0.65a

b

p=0.78 p=1.00

p=0.74

p<0.01

p=0.06

p<0.01

p-Value

Factors affecting perceptions of choice 39

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Univariate analyses

Multiple logistic regression models

Table 3 shows the frequencies of responses of the patients who had undergone adjuvant chemotherapy with regard to the questions pertaining to the proposed determinants of the perception of treatment choice. Note that the responses with regard to some of the determinants were included as bivariate variables in the chi-square analyses due to more than 20% of cells having an expected value of less than five or a cell having an expected value of less than one [15]. With regard to the category of ‘(preferred) involvement in treatment decision-making,’ the analyses showed statistically significant differences between patients who had perceived to have a choice and those who had not. Patients who reported no choice agreed more frequently with the statement that they had left the decision for adjuvant chemotherapy to their doctor (p<0.01). Furthermore, they disagreed more frequently with the statement that they could make the decision for adjuvant chemotherapy themselves (borderline significance: p=0.06) Finally, they preferred more frequently a passive role in treatment decision-making (p<0.01). With regard to the perceived clinical and psychological benefits of adjuvant chemotherapy and the perceived ability to cope with the side effects of treatment, no differences were observed between patients who reported to have had freedom of treatment choice and those who had not. Table 4 shows the frequencies of responses of the patients who had not been treated by means of adjuvant chemotherapy. Again, statistically significant differences were observed for all determinants that pertained to the category of ‘(preferred) involvement in treatment decision-making’ (p<0.05). With regard to the other determinants, patients who had perceived to have had no treatment choice agreed more frequently with the statement that adjuvant chemotherapy would provide them with the belief that they are actively contributing something towards their cure (p<0.05). Furthermore, they agreed more frequently with the statement that adjuvant chemotherapy would prolong their life (borderline significance, p=0.06). Interestingly, when comparing the responses provided in Tables 3 and 4, differences seem to emerge between the patients who underwent adjuvant chemotherapy and inexperienced patients. The former group seems far more positive about the clinical and psychological benefits of adjuvant chemotherapy and about their ability to cope with this treatment, irrespective of whether they perceived to have had any choice of treatment. Furthermore, experienced patients seem to prefer less frequently an active role in decision-making regarding adjuvant chemotherapy and more frequently a passive role. Univariate chi-square analyses indeed showed statistically significant differences (p<0.01) between treatment groups for all items displayed in Tables 3 and 4, except for the first two items referring to ‘I have left the choice of ...’ and ‘I can judge for myself ...’ (p>0.33).

In the multiple logistic regression models, all predictors were entered simultaneously. Predictors with the lowest non-significant p-values on the Wald test were removed step-by-step. Note that the variables that had been recoded into bivariate variables in the chi-square analyses, due to low response frequencies in some categories, were also included in the multiple logistic regression models as bivariate variables. Note further that the belief to have done everything possible to be cured was excluded from the analysis in the group of patients who had been treated with adjuvant chemotherapy because all of these patients, except for one, agreed with this statement. First, we describe the results for the patients who had undergone adjuvant chemotherapy. Note that the dependent variable was the belief of having had treatment choice with regard to adjuvant chemotherapy. In the multiple logistic regression analyses, the variables were removed in the following sequence: (1) ability to cope with the side effects of treatment in the case of severe side-effects (p=0.97), (2) having children living at home (p=0.96), (3) ability to cope with the side effects of treatment in the case of mild sideeffects (p=0.91), (4) stage of disease (p=0.85), (5) marital status (p=0.85), (6) belief to be less worried about the disease recurring (p=0.80), (7) age (p=0.80) (8) time from surgery to filling in questionnaire (p=0.63), (9) belief that adjuvant chemotherapy will prolong life (p=0.59), (10) type of breast surgery (p=0.73), (11) work (p=0.73), (12) belief that one can judge for oneself whether adjuvant chemotherapy is necessary (p=0.49), (13) education (p=0.51), (14) belief to have actively contributed something towards cure (p=0.47), (15) belief that the chance of being cured will be greater (p=0.35), (16) belief that the risk of the disease coming back will be less (p=0.26), (17) being a parent (p=0.25), (18) having experienced hormonal therapy (p=0.22), (19) having experienced post-operative radiotherapy (p=0.22), (20) belief to have left the choice of whether to have adjuvant chemotherapy or not to the doctor (p=0.16). Finally, one statistically significant predictor of the perception of no treatment choice remained, see Table 5. The analysis showed that patients who preferred a shared or a passive role in treatment decision-making were almost four and seven times more likely to have experienced no treatment choice than patients who preferred an active role in decision-making. Next, we describe the results for the patients who had not been treated by means of adjuvant chemotherapy. The variables were removed in the following sequence: (1) time from surgery to filling in questionnaire (p=0.99), (2) ability to cope with the side-effects of treatment in the case of severe side-effects (p=0.97), (3) type of breast surgery (p=0.98), (4) belief to have done everything one can to be cured (p=0.91), (5) belief that one can judge for oneself whether adjuvant

17 (61%) Active 18 (56%)

‘I can judge for myself whether adjuvant ...’

Patients’ preferred involvement in decision-making

Number of patients (%)

3 (11%)

‘... the risk of the disease coming back will be less.’

10 (33%)

‘... severe nausea, severe fatigue, and severe hair ...

*The number of responses varies for every statement due to missing answers. a Categories ‘(strongly) agree’ and ‘neither agree nor disagree’ were pooled. c Categories ‘definitely/probably not’ and ‘maybe/maybe not’ were pooled.

5 (15%)

Being able to cope with the side-effects of treatment ‘... mild nausea, mild fatigue, and mild hair loss?’

12 (43%)

‘... I will think that I am actively contributing ...’

‘... I will be less worried about the disease ...’

7 (25%) 4 (14%)

‘... I believe that I will have done everything I ...’

Perceived psychological benefits

14 (50%)

3 (10%)

Perceived clinical benefits ‘... my life will be prolonged.’

‘... my chance of cure will be greater.’

11 (34%)

Shared

11 (39%)

6 (20%)

3 (9%)

Passive

7 (23%)

39 (21%)

Active

140 (80%)

56 (30%)

112 (60%)

Shared

34 (20%)

37 (22%)

Neither agree nor disagree

37 (20%)

Passive

82 (50%)

(Strongly) Agree

11 (37%)

10 (36%)

9 (32%)

15 (54%)

13 (45%)

9 (30%)

28 (85%)

6 (21%)

15 (54%)

21 (75%)

14 (50%)

10 (36%)

13 (45%)

43 (24%)

30 (16%)

60 (33%)

10 (7%)

21 (12%)

70 (38%)

22 (12%)

10 (6%)

75 (41%)

73 (40%)

32 (20%)

85 (47%)

49 (30%)

63 (35%)

155 (84%)

48 (27%)

138 (74%)

161 (88%)

112 (62%)

73 (41%)

122 (64%)

Definitely/probably not Maybe, maybe not Definitely/probably Definitely/ probably not Maybe, maybe not Definitely/probably

17 (57%)

‘I have left the choice of whether I have ...’

Doctor–patient interaction

(Strongly) Disagree

(Strongly) Agree

(Strongly) Disagree

Neither agree nor disagree

No Choice (N=199)*

Choice (N=33)*

Table 4. Frequencies of responses of patients who had not been treated by means of adjuvant chemotherapy

p=0.53

p=1.00c

p=0.60

p=0.03

p=0.10c

p=0.34c

p=0.82

p=0.06

p<0.01

p=0.04a

p<0.01

p-Value

Factors affecting perceptions of choice 41

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Table 5. Multivariate predictor of perception of no treatment choice in patients who had undergone adjuvant chemotherapy (N=165) Determinants

Odds 95% Confidence ratio

interval

Preference for involvement in treatment p<0.001 decision-making with regard to adjuvant chemotherapy Active role (n=32)

1.00 (reference)

Shared role (n=76)

3.59

(1.52–8.50)

Passive role (n=57)

6.87

(2.57–18.33)

chemotherapy is necessary (p=0.79), (6) being a parent (p=0.91), (7) work (p=0.88), (8) belief to be less worried about the disease recurring (p=0.81), (9) stage of disease (p=0.74), (10) having experienced post-operative radiotherapy (p=0.74), (11) having children living at home (p=0.66), (12) education (p=0.34), age (p=0.50), (13) belief that the risk of the disease coming back will be less (p=0.27), (14) belief to have actively contributed something towards cure (p=0.35), (15) ability to cope with the side-effects of treatment in the case of mild side-effects (p=0.18), (16) belief to have left the choice of whether to have adjuvant chemotherapy or not to the doctor (p=0.17), (17) belief that the chance of being cured will be greater (p=0.14), (18) belief that adjuvant chemotherapy will prolong life (p=0.27). Finally, three statistically significant predictors of the perception of no treatment choice remained, see Table 6. The analysis showed that patients who have experienced hormonal therapy are six times less likely to have experienced no choice with regard to adjuvant chemotherapy. Furthermore, patients who preferred a shared or a passive role in treatment decision-making were four and five times, respectively, more likely to have experienced no treatment choice than patients who preferred an active role in decision-making. Finally, Table 6. Multivariate predictors of perception of no treatment choice in patients who had undergone adjuvant chemotherapy (N=220) Determinants

Having experienced hormonal therapy

Odds

95% Confidence

ratio

interval

p<0.001

No (n=170)

1.00 (reference)

Yes (n=50)

0.16

Preference for involvement

(0.07–0.38)

p=0.002

in treatment decision-making with regard to adjuvant chemotherapy Active role (n=56)

1.00 (reference)

Shared role (n=123)

4.63

(1.87–11.45)

Passive role (n=40)

5.15

(1.30–20.37)

Marital status

widowed/single/divorced patients were two times less likely to have experienced a lack of treatment choice than married or cohabitating patients.

p=0.04

Married/living (apart) together

1.00 (reference)

(n=163) Widowed/single/divorced (n=57)

0.41

(0.17–0.98)

Discussion Our first research goal was to assess quantitatively patients’ perceptions of choice regarding decision-making for adjuvant chemotherapy. We found that 65% of patients who had undergone adjuvant chemotherapy and 87% of inexperienced patients reported that they had felt a lack of choice in decision-making regarding adjuvant chemotherapy. We believe that this percentage is remarkably high. In both groups of patients, the preference for a more passive role in treatment decisionmaking turned out to be a strong and independent predictor of the perception of no treatment choice. Thus, the perception of having had no choice of treatment may have been related to the fact that patients did not want to be involved in treatment decision-making. If we adhere to patient autonomy and shared decision-making, we may consider the perception of no treatment choice as a negative outcome of treatment decision-making. However, if this is the result of the patients’ preference for less active involvement in treatment decision-making, then the question arises whether we should motivate patients to adopt an active role in treatment decision-making. Patients who prefer to be involved in treatment decision-making should clearly be enabled to do so. However, it may be naive to assume that all patients want, and benefit, from active involvement in treatment decision-making [16]. Patients should be able to delegate that responsibility to their physician, if they wish to [17]. Patients tend to rely heavily on their doctors’ opinion when evaluating their own treatment options, with considerable evidence suggesting that many patients do not wish to be involved in decisions regarding their care and instead prefer their physician to make the decisions for them (e.g., Degner et al. [14], Arora and McHorney [18], Beaver et al. [19], Bilodeau and Degner [20], Davison et al. [21], Gattellari et al. [22]). For example, Maly and coauthors [23] reported that the vast majority of respondents who preferred a passive role in treatment decision-making stated that they did not know enough about breast cancer and felt that the doctor was the expert. Encouraging an active role in decision-making when this is not the desired role, could result in undue anxiety and distress [2]. In the univariate analyses, we found some evidence for the impact on the perception of treatment choice of beneficial effects of adjuvant chemotherapy with regard to life prolongation and the belief that one is actively contributing to one’s cure. These results were in agreement with our hypotheses, i.e., patients who had perceived no treatment choice agreed more frequently with the statements that adjuvant chemotherapy would prolong life and that undergoing adjuvant chemotherapy would provide them with the opportunity to actively

Factors affecting perceptions of choice contribute to their cure. However, these effects were observed only in the patients who had not been treated with adjuvant chemotherapy. Moreover, the effects disappeared in the multivariate logistic regression analyses. We believe that these findings are surprising, because our previous qualitative study as well as the studies by Charles and coauthors [10] and Henman and coauthors [11] suggested that faith in the perceived clinical and psychological benefits of adjuvant chemotherapy are important determinants of the perception of no treatment choice. In general, patients do believe in the benefits of adjuvant chemotherapy as is shown by the vast majority of patients who agree with the statements. However, the benefits seem to be of equal importance for patients who perceive to have had a treatment choice and those who have not. Interestingly, we observed in the group of inexperienced patients that married or cohabitating patients were more likely to have perceived no treatment choice. It seems plausible that patients with a steady relationship feel that they are obliged to their partners to do everything within their possibilities to stay well. In the literature, not much is known about the impact of sociodemographic characteristics on the perception of perceived choice. Instead, studies have focused on the impact of socio-demographic characteristics on preferred involvement in treatment decision-making. For example, research has shown that preferences for more passive participation in decision-making were related to older age [14,18–20,23–26], less education [2,14,18,19,25,26], being married [14,24], being a male [18,24,26], and lower social class [19]. The results with regard to being married are in agreement to our results, i.e., being married is related to a preference for a more passive involvement in treatment decision-making and may thus be related to the perception of no treatment choice. Furthermore, patients who were treated by means of hormonal therapy and who had not experienced adjuvant chemotherapy were about six times more likely to have experienced freedom of choice with regard to adjuvant chemotherapy than patients who had not been treated with either adjuvant hormonal therapy or adjuvant chemotherapy. In the Netherlands, whether or not adjuvant chemotherapy or adjuvant hormonal therapy is proposed to an individual patient, is dependent upon guidelines that are based on clinical and personal characteristics, such as menopausal status, age, tumour size, lymph node status, Mitotic Activity Index (MAI), oestrogen receptor status, and progesterone receptor status. Patients for whom either adjuvant chemotherapy or adjuvant hormonal therapy is recommended may have actually been given a choice between hormonal therapy or adjuvant chemotherapy or may have perceived that they had a choice for either treatment. In contrary, patients for whom neither adjuvant hormonal therapy nor adjuvant chemotherapy was recommended may have felt that they had no choice for either option. Another interesting result pertained to the differences that were observed between patients who had undergone

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adjuvant chemotherapy and inexperienced patients. The fact that the former group was far more positive about the clinical and psychological benefits of adjuvant chemotherapy and about their ability to cope with this treatment may be explained by the effect of some psychological mechanism to justify the adjuvant chemotherapy treatment that these patients had undergone [27]. The finding that experienced patients more frequently preferred a passive role in decision-making regarding chemotherapy may be due to the fact that these patients may have more advanced disease than the patients who had not been treated by means of chemotherapy [14,18]. One of the major limitations of our study is that we do not know whether patients had actually been offered a choice of adjuvant chemotherapy treatment. As stated above, whether or not adjuvant chemotherapy or hormonal therapy is proposed to an individual patient, is dependent upon guidelines. Supposedly, patients who have been treated with adjuvant chemotherapy have all been offered the choice for adjuvant chemotherapy by their doctor. Adjuvant chemotherapy may also have been offered to some patients who refused this treatment and thus ended up in the group of patients who had not been treated with adjuvant chemotherapy. However, independent of whether or not treatment choice has actually been offered, the subjective experience of having had choice is what the patient remembers. It seems likely that it is this subjective experience that determines the impact on quality of life and satisfaction with care received rather than having had objective choice. In support of this hypothesis, a number of studies have indeed shown that patients who had perceived a choice of treatment had better psychological and physical well-being than patients who had not perceived a choice, irrespective of whether the choice had actually been offered [3,4,6,8]. Furthermore, our findings applied both to patients who had undergone adjuvant chemotherapy and those who had not, indicating that the preferred involvement in treatment decisionmaking is an important determinant of patients’ perceived freedom of treatment choice irrespective of whether or not adjuvant chemotherapy was actually offered. Another limitation of our study concerns the generalizability or our results. As the non-responders in our study were slightly older and had been treated with adjuvant chemotherapy less frequently, we may not be able to generalize our results so that they refer to the whole population of disease-free patients treated for early-stage breast cancer within the past 5 years. Finally, the majority of patients had surgery for cancer between 2 and 6 years before they filled in the questionnaire. We do not think that is a major limitation for our study because the time between surgery and filling in the questionnaire was not related to having perceived freedom of treatment choice. Furthermore, psychological processes, such as post-decision justification and cognitive dissonance reduction, may have influenced patients’ responses. However, we did not include patients with metastasized disease, thus all

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SJT Jansen et al.

patients will have perceived their treatment decision to be a good one. It is not clear whether this would have any influence on perceived freedom of treatment choice. In summary, using a large sample of patients, treated for early-stage breast cancer within the past 5 years, we have shown that the perception of a lack of treatment choice was primarily determined by the preference for a more passive role in treatment decision-making. Perception of treatment choice was not related to clinical and psychological benefits of adjuvant chemotherapy.

Acknowledgement This study was supported by a grant from the Dutch Cancer Society (UL 2000-2334).

Appendix A (Preferred) Involvement in treatment decision-making: (1) I have left the choice of whether I have adjuvant chemotherapy or not to my doctor. (2) I can judge for myself whether adjuvant chemotherapy is necessary. (3) People differ in the degree to which they want to take part in treatment decision-making about adjuvant chemotherapy. Some patients prefer to leave decisions about chemotherapy up to their doctor, while others prefer to participate in these decisions. Please check the statement that best describes what you prefer:a I prefer that the doctor makes the decision about treatment with adjuvant chemotherapy. I prefer that the doctor makes the decision about treatment with adjuvant chemotherapy, but strongly considers my opinion. I prefer that the doctor and I make the decision about treatment with adjuvant chemotherapy together on an equal basis. I prefer that I make the decision about treatment with adjuvant chemotherapy, but strongly consider the doctor’s opinion. I prefer that I make the decision about treatment with adjuvant chemotherapy. Perceived clinical benefits: If I am treated with adjuvant chemotherapy, then ... (4) My life will be prolonged. (5) The risk of the disease coming back will be less. (6) My chance of being cured will be greater. Perceived psychological benefits If I am treated with adjuvant chemotherapy, then ... (7) I believe that I will have done everything I can to be cured. (8) I will think that I am actively contributing something towards my cure. (9) I will be less worried about the disease recurring. Being able to cope with the side-effects of treatment Do you think that you could cope with the side-effects of adjuvant chemotherapy if they consisted of: (10) Mild nausea, mild fatigue, and mild hair loss? (11) Severe nausea, severe fatigue, and severe hair loss? a

Adapted from Sutherland et al. [13].

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27. Jansen SJT, Otten W, Baas-Thijssen MCM, van de Velde CJH, Nortier JWR, Stiggelbout AM: Explaining differences in attitude towards adjuvant chemotherapy between experienced and inexperienced breast cancer patients. J Clin Oncol 23: 6623–6630, 2005 Address for offprints and correspondence: Sylvia J.T. Jansen, Department of Medical Decision Making, Leiden University Medical Center, J10-S, P.O. Box 9600, 2300, Leiden, RC, The Netherlands; Tel.: +3115-2783641; Fax: +31-71-5264422; E-mail: [email protected]