8
Volume 1, Number 2 January 2004 original contribution Decision-Making Role Preferences of Patients Receiving Adjuvant Cancer Treatment: A University of Rochester Cancer Center Community Clinical Oncology Program Cleveland G. Shields, 1,2 Gary R. Morrow, 2,3 Jennifer Griggs, 4,5 Julie Mallinger, 4 Joseph Roscoe, 3 James L. Wade, 6 Shaker R. Dakhil, 7 Tom R. Fitch 8 Key words: Active role, Age, Breast cancer, Education, Passive role, Prostate cancer, Sharing role Abstract This study examined patients’ preferences for involvement in treatment decision-making. This was a multisite survey study of 1014 patients diagnosed with a variety of cancers. Patients’ treatment decisions, role preferences, and characteristics were assessed with a questionnaire administered at the time of their first visit with a medical or radiation oncologist. The data showed that 35.7% preferred passive roles, 43.7% preferred shared roles, and 20.3% preferred active roles in decision-making. Bivariate analyses indicated that patients with a college education or in professional or managerial occupations preferred more active roles in decision- making compared with other patients. Similarly, men with prostate cancer and women with breast cancer, compared with other patients, also preferred more involvement in decision-making. Age was not associated with decision-making role preferences. Avoidant and fatalistic coping were associated with a passive decision-making role. Multinomial logistic regression analysis found that patients in professional/managerial occupations preferred a shared role (odds ratio [OR], 1.6; CI, 1.2-2.4) or an active role (OR, 2.3; CI, 1.5-3.5) compared with patients in other occupations. Patients with prostate or breast cancer preferred shared (OR, 2.3; CI, 1.6-3.2) or active roles (OR, 1.8; CI, 1.2-2.8) compared with patients with other diagnoses. Patients who scored higher on the Mental Adjustment to Cancer fatalism scale were less likely to prefer shared (OR, 0.94; CI, 0.89-0.99) or active roles (OR, 0.90; CI, 0.84- 0.96) compared with patients with a less fatalistic orientation. Decision-making role preferences were influenced by multiple factors. Most patients wanted a shared or active role in treatment decision-making. Our results suggest that some patients may require encouragement to take a shared or active role in decision-making. 1 Department of Family Medicine, 2 Department of Psychiatry, 3 Department of Radiation Oncology, 4 Department of Medicine, Hematology and Oncology, 5 Department of Community and Preventive Medicine University of Rochester, NY 6 Central Illinois Community Clinical Oncology Program, Decatur Memorial Hospital, Decatur 7 Wichita Community Clinical Oncology Program, KS 8 Mayo Clinic, Scottsdale Community Clinical Oncology Program, AZ Address for correspondence: Cleveland G. Shields, PhD, University of Rochester Medical Center, Departments of Family Medicine & Psychiatry, 1381 South Ave, Rochester, NY 14620 Fax: 585-473-2245; e-mail: [email protected] Submitted: Jul 2, 2003; Revised: Aug 13, 2003; Accepted: Aug 25, 2003 Supportive Cancer Therapy, Vol 1, No 2, 119-126, 2004 119 Introduction Patients’ involvement in treatment decision-making has undergone significant changes in the United States during the past 40 years. As recently as 1961, a diagnosis of cancer was frequently withheld from the patient and physicians were likely to make treatment decisions without the patient’s input. 1,2 In the traditional model of physician–patient rela- tions, physicians made decisions for their patients. 3 During the past 3 decades, the traditional model of physician– patient relations has been criticized 4-6 and alternative mod- els have been proposed. 7-10 Although alternative approaches to the traditional paternalistic model differ in emphasis, they all share a common interest in involving patients in decisions about their medical care. Not only have models of physi- cian–patient relations changed, but recently enacted legisla- tion in the United States requires that physicians disclose to Electronic forwarding or copying is a violation of US and International Copyright Laws. Authorization to photocopy items for internal or personal use, or the internal or personal use of specific clients, is granted by Cancer Information Group, ISSN #1543-2912, provided the appropriate fee is paid directly to Copyright Clearance Center, 222 Rosewood Drive, Danvers, MA 01923 USA 978-750-8400.

Decision-Making Role Preferences of Patients Receiving Adjuvant Cancer Treatment: A University of Rochester Cancer Center Community Clinical Oncology Program

  • Upload
    tom-r

  • View
    212

  • Download
    0

Embed Size (px)

Citation preview

Volume 1, Number 2 • January 2004

original contribution

Decision-Making Role Preferences of Patients ReceivingAdjuvant Cancer Treatment: A University of RochesterCancer Center Community Clinical Oncology Program Cleveland G. Shields,1,2 Gary R. Morrow,2,3 Jennifer Griggs,4,5 Julie Mallinger,4 Joseph Roscoe,3 James L. Wade,6

Shaker R. Dakhil,7 Tom R. Fitch8

Key words: Active role, Age, Breast cancer, Education, Passive role,Prostate cancer, Sharing role

Abstract

This study examined patients’ preferences for involvement in treatment decision-making. This was a multisite survey study of 1014patients diagnosed with a variety of cancers. Patients’ treatment decisions, role preferences, and characteristics were assessed witha questionnaire administered at the time of their first visit with a medical or radiation oncologist. The data showed that 35.7%preferred passive roles, 43.7% preferred shared roles, and 20.3% preferred active roles in decision-making. Bivariate analysesindicated that patients with a college education or in professional or managerial occupations preferred more active roles in decision-making compared with other patients. Similarly, men with prostate cancer and women with breast cancer, compared with otherpatients, also preferred more involvement in decision-making. Age was not associated with decision-making role preferences.Avoidant and fatalistic coping were associated with a passive decision-making role. Multinomial logistic regression analysis foundthat patients in professional/managerial occupations preferred a shared role (odds ratio [OR], 1.6; CI, 1.2-2.4) or an active role (OR,2.3; CI, 1.5-3.5) compared with patients in other occupations. Patients with prostate or breast cancer preferred shared (OR, 2.3; CI,1.6-3.2) or active roles (OR, 1.8; CI, 1.2-2.8) compared with patients with other diagnoses. Patients who scored higher on the MentalAdjustment to Cancer fatalism scale were less likely to prefer shared (OR, 0.94; CI, 0.89-0.99) or active roles (OR, 0.90; CI, 0.84-0.96) compared with patients with a less fatalistic orientation. Decision-making role preferences were influenced by multiple factors.Most patients wanted a shared or active role in treatment decision-making. Our results suggest that some patients may requireencouragement to take a shared or active role in decision-making.

1Department of Family Medicine, 2Department of Psychiatry, 3Department of Radiation Oncology, 4Department of Medicine, Hematology and Oncology, 5Department of Community and Preventive Medicine

University of Rochester, NY6Central Illinois Community Clinical Oncology Program, Decatur Memorial

Hospital, Decatur 7Wichita Community Clinical Oncology Program, KS 8Mayo Clinic, Scottsdale Community Clinical Oncology Program, AZ

Address for correspondence: Cleveland G. Shields, PhD, University ofRochester Medical Center, Departments of Family Medicine & Psychiatry,1381 South Ave, Rochester, NY 14620Fax: 585-473-2245; e-mail: [email protected]

Submitted: Jul 2, 2003; Revised: Aug 13, 2003; Accepted: Aug 25, 2003Supportive Cancer Therapy, Vol 1, No 2, 119-126, 2004

119

IntroductionPatients’ involvement in treatment decision-making has

undergone significant changes in the United States duringthe past 40 years. As recently as 1961, a diagnosis of cancerwas frequently withheld from the patient and physicianswere likely to make treatment decisions without the patient’sinput.1,2 In the traditional model of physician–patient rela-tions, physicians made decisions for their patients.3 During

the past 3 decades, the traditional model of physician–patient relations has been criticized4-6 and alternative mod-els have been proposed.7-10 Although alternative approachesto the traditional paternalistic model differ in emphasis, theyall share a common interest in involving patients in decisionsabout their medical care. Not only have models of physi-cian–patient relations changed, but recently enacted legisla-tion in the United States requires that physicians disclose to

Electronic forwarding or copying is a violation of US and International Copyright Laws.Authorization to photocopy items for internal or personal use, or the internal or personal use of specific clients, is granted by Cancer Information Group, ISSN #1543-2912, provided the appropriate fee is paid directly to Copyright Clearance Center, 222 Rosewood Drive, Danvers, MA 01923 USA 978-750-8400.

Supportive Cancer Therapy

120

Decision-Making Role Preferences in Patients with Cancer

the patient not only his or her diagnosis but also, in the caseof breast cancer, the full spectrum of surgical treatmentoptions.11 It is important to examine patients’ decision-mak-ing role preferences because a number of studies have shownthat patients who are involved in treatment decision-makingwith cancer12 and other illnesses13-18 report better health-related outcomes.

This study expands on earlier work that examined deci-sion-making role preferences of patients with cancer. Studiesdescribing patient decision-making preferences have usuallycategorized patients as active or passive.19,20 Active patientsare those who prefer to make the final decisions regardingtheir treatment. In addition to active and passive patients,other studies have also described patients who want a sharedrole in decision-making (ie, patients who want to shareresponsibility for treatment decision-making with theirphysicians).19 In this study, we examined decision-makingrole preferences categorized as passive, shared, or active.

The majority of previous studies have focused on patientswith a single type of cancer.19-27 Studies that examined mixedcancer populations were neither designed nor powered to com-pare patient decision preferences by cancer diagnosis.12,24,28-

30 Unlike these studies, this study is based on a large sampleof patients recruited from a wide variety of geographic regionswith a variety of cancers. We examined the effect of patientcharacteristics and cancer type on patients’ preferences forinvolvement in treatment decision-making. This study usedmultivariate methods to examine the unique contribution ofspecific variables (ie, age, education level, type of cancer,understanding patients’ decision-making role preferences;

Table 1). Study hypotheses are that younger age, higher edu-cation, having a professional or managerial occupation, anddiagnosis of breast or prostate cancer will be associated withshared or active decision-making role preferences. Issues withbreast and prostate cancer treatment have been widely publi-cized, and they each have active constituencies who lobby for

Table 1

Patient Demographics

Mean (SD)

Male(n = 362)

Female(n = 651)

Age (Years)

Marital Status

Treatment Decision

Health (Self-Rated)

Karnofsky Score

MAC Denial Scale

MAC Fatalism Scale

Abbreviation: MAC = Mental Adjustment to Cancer

65.52 (12.5)

77% (0.42)

2.74 (1)

2 (1.01)

92.3 (10.65)

2.39 (0.78)

3.04 (0.64)

57.88 (12.35)

68% (0.47)

2.77 (0.93)

2.35 (0.99)

92.51 (10.85)

2.6 (0.71)

3.2 (0.55)

Table 1 (continued)

Patient Demographics

Type of Cancer

Alimentary tract

Breast

Head and neck

Genitourinary

Prostate

Gynecologic

Hematologic neoplasms

Lung

Race

Black

White

Other

Highest Education Level

< 7 Years

7-9 Years

10-11 Years

High school graduate

Some college

Undergraduate degree

Graduate degree

Employment

Labor

Technical

Clerical/homemaker

Service

Management

Professional

Number of Patients

Male Female

44 (12.12%)

5 (1.38%)

9 (2.48%)

48 (13.22%)

122 (33.61%)

44 (12.12%)

75 (20.66%)

25 (6.89%)

333 (91.74%)

5 (1.38%)

5 (1.45%)

11 (3.19%)

22 (6.38%)

121 (35.07%)

63 (18.26%)

80 (23.19%)

43 (12.46%)

53 (18.66%)

78 (27.46%)

5 (1.76%)

18 (6.34%)

53 (18.66%)

77 (27.11%)

29 (4.45%)

444 (68.2%)

4 (0.61%)

4 (0.61%)

49 (7.53%)

28 (4.3%)

54 (8.29%)

33 (5.07%)

605 (92.93%)

13 (2%)

2 (0.33%)

15 (2.44%)

35 (5.69%)

229 (37.24%)

159 (25.85%)

119 (19.35%)

56 (9.11%)

28 (5.17%)

58 (29.15%)

107 (19.74%)

30 (5.54%)

43 (7.93%)

176 (32.47%)

Not all categories include all patients as a result of random missing values.

121

Volume 1, Number 2 • January 2004

Cleveland G. Shields et al

research and treatment funding.31-35 We propose that thispublic awareness will lead to patients with these cancers pre-ferring to play an active or shared role in decision-making.

Materials and MethodsThe data for this study were collected as part of a longitu-

dinal study of the information needs of patients with cancerundergoing chemotherapy or radiation therapy. In this arti-cle, we focus on the pretreatment assessment of decision-making preferences. Study subjects were clinic outpatients at18 private medical oncology practice groups that were grantrecipients of the National Cancer Institute’s CommunityClinical Oncology Program (CCOP) and were members ofthe University of Rochester James P. Wilmot Cancer Center(URCC) CCOP Research Base between January 30, 2001,and September 13, 2002. All of the practices in the CCOPare community-based. Informed consent was obtained beforedata collection, and the University of Rochester ResearchSubjects Review Board and the institutional review boards ofeach of the participating sites approved the study.

Research ParticipantsStudy participants were patients who had been recently

diagnosed with cancer and whose treatment plan includedchemotherapy or radiation therapy. Prior surgery was allowedbut not prior chemotherapy or radiation therapy. Patientswith diagnoses of breast, lung, prostate, hematologic, gas-trointestinal, or head and neck cancer were accrued to thestudy before their first treatment. All data reported hereinwere obtained through a combination of semistructuredinterview and self-administered questionnaires collectedwithin a 2-week window before initiation of therapy.

Measurement InstrumentsWe assessed patient preferences for participation in treat-

ment decision making using the scale first developed by

Sutherland and colleagues29 and revised by Degner and col-leagues.19,22 This scale has been widely used in previous stud-ies of patients with cancer and classifies individuals as havingactive, shared, or passive decision-making styles.23,28,30,36-37

The scale consists of 5 response categories from whichpatients choose the response that most describes their pre-ferred role in decision-making. The first 2 categories are com-bined for the passive role, the third category is the shared role,and the last 2 categories are the active role (Table 2).

Health Status Health status was assessed in 2 ways. Physicians used the

Karnofsky performance status scale38 to rate patients’ healthstatus from totally incapacitated (0) to healthy with no sign ofdisease (100). Patients also completed a single-item health ques-tion in which they rated their health as poor (1) to excellent (5).

We assessed coping using the denial and fatalism subscalesfrom the Mental Adjustment to Cancer (MAC) scale.39 TheMAC scale assesses patients’ cognitive and behavioralresponses to a diagnosis of cancer. In our sample, the denialsubscale had a Cronbach α of 0.82 and the fatalism subscalehad a Cronbach α of 0.71. These 2 subscales were chosenfrom the MAC scale because it was hypothesized that these 2factors would have an effect on patients’ desire for involve-ment in treatment decision-making.

Questionnaires also collected information on patients’ sex,marital status, ethnicity and race, cancer diagnosis, age, edu-cation, and occupation. Education was assessed on a 7-pointscale from < 7 years education to completed graduate school.For the analysis, however, we treated education as a dichoto-mous variable of some versus no college. Individuals who indi-cated that they had managerial or professional positions wereclassified as having management/professional occupations.

Statistical AnalysisFirst, we examined patients’ preferred decision-making

roles by types of cancer and compared our results with the

Table 2

Decision-Making Preferences Scale

Preferences

“I prefer to leave all the decisions regarding my treatment to my doctor.”

“I prefer that my doctor make the final decision about which treatment will be used, but seriously consider my opinion.”

“I prefer that my doctor and I share responsibility for deciding which treatment is best for me.”

“I prefer to make the final selection of my treatments after seriously considering my doctor's opinion.”

“I prefer to make the final decision about the treatment I will receive.”

102 (11.1%)

225 (24.6%)

400 (43.7%)

167 (18.2%)

20 (2.1%)

Numberof Patients(n = 914)

Supportive Cancer Therapy

122

Decision-Making Role Preferences in Patients with Cancer

results found in previous studies. We then examined the bivari-ate relationships between decision-making role preferences andour independent variables using χ2 and analysis of variance(ANOVA) as appropriate. There was no significant relationshipbetween sex and decision role preference (χ2 = 1.39; P = 0.49);thus, we combined men and women for the remaining analy-ses. Finally, multivariate analyses were conducted usinglogistic (multinomial or generalized logit) regression. For thelogistic regression, we entered age, marital status (yes or no),management/professional occupation (yes or no), MACdenial, and MAC fatalism. We did not include education in

the regression because education and management/professional occupation were highly correlated witheach other. We also entered 2 orthogonal contrastcodes for type of cancer: (1) breast or prostate cancerversus all other cancer types (coded: breast or prostate,–1; all others, 2), and (2) breast versus prostate cancer(coded: breast, 1; prostate, –1; all others, 0).

ResultsDescriptive Statistics

Table 1 shows the demographics of the sample. Ofthe originally enrolled 1014 patients, 64% werewomen with a mean age of 57.88 years (range, 24-88years). The mean age of male participants was 65.52years (range, 20-92 years). Most patients (> 92%)were white and an additional 6% were black. Morethan 50% of patients had some college education,and most (men, 77%; women, 68%) were married.Patients with breast cancer accounted for 47%, fol-lowed in incidence by prostate cancer (17.8%) andlung cancer (13.5%).

As a result of random missing data, the sampleavailable with complete data for analysis was reducedfrom 1014 to 914. Table 2 shows the items of thedecisional preferences scale. Eleven percent ofpatients chose the first category and another 25%chose the second category. These 2 categories com-bined make up the passive role category. Forty-fourpercent chose the third category, which is the sharedrole. Eighteen percent chose the fourth category, andanother 2% chose the fifth category. These last 2 cat-egories make up the active role category.

Decision-Making Role PreferencesTable 3 shows the URCC-CCOP results com-

pared with those of published studies.12,19-30,40

All these studies used the same scale for assessingdecision role preference except for 1 study.28 Fromthe URCC-CCOP total sample of men and women,we found that 20.4% wanted active involvement intreatment decision making, 43.9% wanted to share

the decision with their physician, and 35.7% wanted thephysician to make the decision for them. For mixed cancerpopulations, the URCC-CCOP results are similar to thosefound by other researchers. For prostate cancer, URCC-CCOP results were somewhat different than those in 2 pre-vious studies.26,27 In the URCC-CCOP study, close to 50%preferred a shared role, whereas 50% in the study byDavison et al preferred an active role26 and 60% in thestudy by Wong et al chose a shared role.27 For patientswith breast cancer, we found that 20.9% wanted an activerole, 49.2% preferred a shared role, and 29.8% desired a

Table 3

Comparison of URCC-CCOP Results with Previous Studies

Preferred RoleStudy (Year)

Numberof

Patients Active Shared Passive

Mixed Cancer Population

Current URCC-CCOP study

Gattellari et al (2001)12

Bruera et al (2000)24

Cassileth et al (1980)28

Sutherland et al (1989)29

Stiggelbout and Kiebert (1997)30

Ovarian Cancer Population

Stewart et al (2000)25

Prostate Cancer Population

Current URCC-CCOP study*

Davison et al (2002)26

Wong et al (2000)27

Breast Cancer Population

Current URCC-CCOP study

Degner et al (1997)19

Hack et al (1994)20

Beaver et al (1996)21

Bilodeau and Degner (1996)22

Wallberg et al (2000)23

Bruera et al (2000)40

*This study classified patients dichotomously as either active or passive.Abbreviation: URCC-CCOP = University of Rochester James P. Wilmot Cancer Center Community Clinical Oncology Program

1014

233

78

256

52

55

105

122

80

101

450

1012

35

150

74

201

57

20.4%

19%

20%

66%

10%

13%

14.3%

26.3%

50%

18%

20.9%

22%

23%

20%

20%

13%

23%

43.8%

45%

63%

27%

25%

62.9%

47.4%

42.5%

60%

49.2%

44%

57%

28%

37%

44%

67%

35.8%

37%

17%

33%

63%

61%

22.9%

26.3%

7.5%

22%

29.8%

34%

20%

52%

43%

34%

11%

123

Volume 1, Number 2 • January 2004

Cleveland G. Shields et al

passive role. These results are similar to findings of otherstudies on patients with breast cancer and their decision-making role.19-23,40

Bivariate Analyses In Table 5, we used χ2 analysis to show that marital status,

age, and sex were not related to decision-making role prefer-ences. College-educated patients were less likely to desire apassive role and more likely to prefer shared or active roles.Patients in professional/managerial occupations were lesslikely to prefer passive roles and more likely to prefer sharedor active roles. Using ANOVA, we found that a higher scoreon the MAC denial or fatalism subscales was significantlyassociated with preference of a passive decision-making role.Diagnoses of prostate cancer for men and breast cancer forwomen were related to higher rates of shared and active deci-sion role preferences. We also examined the relationshipbetween geography of the CCOP practice and patient deci-sion-making role preferences and found no relationship.

Correlations of Independent VariablesTable 5 shows the correlations of the independent variables.

As expected, college education and decision-maker occupa-tional status are strongly correlated. Fatalism and denial onthe MAC scale are moderately correlated. In the logisticregression, we will use decision-maker occupational status butnot college education because they are strongly correlated.

Multivariate AnalysesUsing logistic regression analysis, we calculated the odds

ratios (ORs) and their confidence intervals for multivariateanalyses. We found that patients in professional/managerialoccupations, compared with patients in other occupations,were more likely to prefer a shared (OR, 1.6; CI, 1.2-2.4) oractive role (OR, 2.3; CI, 1.5-3.5). Similarly, patients withprostate or breast cancer were more likely to prefer shared(OR, 2.3; CI, 1.6-3.2) or active roles (OR, 1.8; CI, 1.2-2.8)compared with patients with other diagnoses. Last, patientswho scored higher on the MAC fatalism scale were less like-ly to prefer shared (OR, 0.94; CI, 0.89-0.99) or active roles(OR, 0.90; CI, 0.84-0.96) than patients with a less-fatalisticorientation. No other variables were significant in the model,which accounted for 9% of the variance. We performed a sec-ond logistic regression comparing those with shared versusactive roles. We found that being in a decision-making occu-pation was associated with preferring an active versus ashared role (OR, 1.48; CI, 1.04-2.13).

DiscussionBivariate analyses indicated that patients who were in pro-

fessional/managerial occupations, patients who had prostate orbreast cancer, and patients with a college education were more

likely to prefer shared or active involvement in treatment deci-sion-making compared with other patients. Conversely,avoidant and fatalistic coping styles were associated with pas-sive decision-making roles. Age was not associated with deci-sion-role preferences. These findings were extended by a mul-

116 (45%)

283 (43%)

171 (42%)

229 (46%)

239 (41%)

161 (48%)

134 (41%)

266 (45%)

80 (49%)

125 (30%)

97 (45%)

23 (21%)

61.0 (12.2)

92.9 (10.6)

9.9* (2.9)

15.6* (3)

Table 4

Bivariate Results

Number of PatientsVariable

Active χ2SharedPassive

Marital Status

Unmarried

Married

Education

≤ High school

College

Professional/Managerial Job

No

Yes

Sex

Male

Female

Breast Cancer (Female Only)

No

Yes

Prostate Cancer (Male Only)

No

Yes

Mean (SD)

Age (Years)

Karnofsky score

MAC denial

MAC fatalism

*Values with different symbols were significantly different according to a contrast analysis.†P < 0.005.Abbreviations: ANOVA = analysis of variance; MAC = Mental Adjustment to Cancer

95 (37%)

229 (35%)

174 (42%)

153 (30%)

244 (42%)

83 (25%)

120 (37%)

207 (35%)

27 (17%)

88 (21%)

43 (20%)

28 (25%)

60.8 (13.5)

91.5 (10.5)

10.5* (3)

16.3* (2.8)

45 (18%)

141 (22%)

67 (16%)

120 (24%)

95 (17%)

92 (27%)

71 (22%)

116 (20%)

55 (34%)

210 (50%)

75 (35%)

59 (54%)

59.6 (13.3)

93.0 (11)

9.7* (3.1)

15.1* (3)

0.4

16.07*

32.74*

0.49

20.54*

18.75*

ANOVA F

0.75

0.95

4.67†

10†

Supportive Cancer Therapy

124

Decision-Making Role Preferences in Patients with Cancer

tivariate logistic regression analysis to ascertain the uniquecontribution, if any, that each of these 6 patient variables madeto decision preference style. The analysis showed that manage-ment/professional occupation status, diagnosis of breast orprostate cancer, and less fatalism on the MAC scale wereuniquely associated with preferences for more active decision-making roles. These results confirm and extend the results ofprevious studies of decision-making role preferences. Ourlarge sample size allowed us to use multivariate models toexamine the unique contributions of several variables inexplaining the differences in decision-making role preferences.

Effect of Education and Occupation onDecision-Making Role Preference

Having a college education was related to preferringshared and active roles. In the logistic regression model,replacing occupation with education produced similarresults. Previous studies have found that education was asso-ciated with a preference of shared or active roles,23,37 andanother found that higher social class, which is similar tooccupational status, was associated with a preference forshared or active roles. Decision-making occupation was asso-ciated with choosing active over shared roles. One mightspeculate that patients with more years of education or thosein professional or managerial occupations may be more accus-tomed to making decisions and thus prefer a shared or activerole in the decision-making about their own cancer care.

Effect of Coping on Decision-Making Role PreferenceHigher denial and fatalism coping were negatively corre-

lated with preferring a more involved decision-making role

for patients in the bivariateanalysis, whereas only fatalismwas significant in the multi-variate analyses. To assumeshared or active roles in treat-ment decision-making requirespatients to acknowledge theirdiagnosis and to muster somehope that their own actionsmight improve their situa-tion. By definition, patientswho engage in denial wouldhave difficulty acknowledgingtheir situation, and patientswho are fatalistic would bedisinclined to believe thattheir behavior could make adifference in their treatment.Patients with prostate orbreast cancer were slightly lessfatalistic, suggesting thatpatients who have cancers

with poorer prognosis may be more fatalistic and less inclinedto desire shared or active decision-making roles. This also sug-gests that fatalism and denial are more state than trait meas-ures, because it appears that fatalism and denial are somewhata function of the type and prognosis of one’s cancer.

Effect of Type of Cancer on Decision-MakingRole Preference

Men who had prostate cancer and women who had breastcancer were more likely to prefer shared or active roles in deci-sion-making. It is possible that these patients’ preferences forshared or active roles may be a function of the fact thatprostate and breast cancer have received a great deal of publicattention. Both have active constituencies lobbying forresearch and early detection. This greater public awarenessand wealth of available information about these cancers mayfoster great activism on the part of the individual patientdiagnosed with one of these cancers. In addition, more treat-ment options exist for breast and prostate cancer, which couldalso influence patients’ desire for shared or active roles.

ImplicationsOur findings have implications for the physician–patient

relationship in oncology by shedding light on factors thatlead patients to desire a shared or active role in decision mak-ing. One study found that oncology patients who reported ashared role in decision-making were more satisfied with theircare.12 Research in diabetes13,14 and other illnesses15-18 hasshown that patient involvement in decision-making leads toimproved adherence to treatment regimens and greater satis-faction with care. We were able to show that education, cop-

Table 5

Correlations of Independent Variables

Age

College Education

Karnofsky Score

Decision-Making Occupation

Prostate/Breast Cancer Diagnosis

MAC Denial

MAC Fatalism

–0.14*

–0.04

–0.02

–0.04

0.03

0.06

0.11*

0.44†

0.17*

–0.13*

–0.13*

–0.14

–0.23†

0.05

0.05

0.17*

–0.13*

–0.12*

–0.05

–0.10*

0.34†

College Education

Karnofsky Score

Decision- Making

Occupation

Prostate/Breast Cancer

Diagnosis

MAC DenialScale

*P < 0.001.†P < 0.0001. Abbreviation: MAC = Mental Adjustment to Cancer

125

Volume 1, Number 2 • January 2004

Cleveland G. Shields et al

ing, and type of cancer were related to patients’ preferencesfor involvement in decision-making with their oncologists.More research needs to be done to understand patients’ pref-erences and the factors that lead to their taking a shared oractive role in decision-making with their physicians.

Patients in this study had similar decision-making rolepreferences to those reported in previously published stud-ies. Comparison with other studies shows that a substantialminority of patients prefers a passive role and that this per-centage appears to be relatively stable. A diagnosis of cer-tain types of cancers that have less-positive prognoses mayresult in patients preferring a passive role in decision-mak-ing. We speculate that oncologists whose practice style istraditional are less likely to encourage patients’ participa-tion in decision-making. Oncologists whose practice stylehas been influenced by newer models of the physician–patient relationship may actively solicit patients’ views andvalues about their illness. In doing so, they are more likelyto understand patients’ preferences for involvement in deci-sion-making. Two studies found that matching patients’preferences for decision-making role results in greater satis-faction.41,42 However, another study found that patientswho reported a shared role, regardless of match or mis-match, were more satisfied with information and with theemotional support they received.12 Perhaps physicians needto encourage patients who might prefer a passive role totake some level of involvement in decision-making. It maybe important to develop communication strategies thatemphasize to patients that it is important for their care thatthey communicate their questions and treatment prefer-ences to the physician.

Limitations and Future DirectionsBecause this was a cross-sectional study, we could not

examine the effects of decisional role preference on patientsatisfaction with care or on their perceived health status.Depending on type of treatment before seeing a medical orradiation oncologist, patients in this study had seen otherphysicians numerous times before completing this survey.Our data did not allow us to control for information they hadalready received. We also did not have information on thestage of the disease. It is possible that fatalism was associat-ed with poor prognosis and was more responsible for variancein decision-making role preference than the variables weexamined. Future studies from this program will examinelongitudinal stability of preferences and their role inpatients’ satisfaction and health. More research is needed toascertain what happens in the physician–patient interactionthat enables physicians to understand patient preferences andencourages or discourages patients from sharing in treatmentdecisions. In this study, we have treated decision-making rolepreferences as if they were purely a characteristic of thepatients. However, it is likely that patients’ preferences are

influenced by the interactions with health care providers.Future research should examine decision-making role prefer-ence as not just a characteristic of patients but also ofpatients’ interactions with providers.

AcknowledgementsThis study was supported in part by a Division of Cancer

Control and Population Sciences, National CancerInstitute, supplement to Public Health Service grantU10CA37420 and by grant RSG-01-071-PBP from theAmerican Cancer Society.

References1. Fitts WT, Ravdin IS. What Philadelphia physicians tell patients with

cancer. JAMA 1953;153:901-904.2. Oken D. What to tell cancer patients: a study of medical attitudes.

JAMA 1961; 175:1120-1128.3. Szasz TS, Hollender MH. The basic models of the doctor-patient rela-

tionship. Arch Intern Med 1956; 97:585-592.4. Deber RB. Physicians in health care management: 8. The patient-physi-

cian partnership: decision making, problem solving and the desire toparticipate. CMAJ 1994; 151:423-427.

5. McKinstry B. Paternalism and the doctor-patient relationship in gener-al practice. Br J Gen Pract 1992; 42:340-342.

6. Neighbour R. Paternalism or autonomy? Practitioner 1992; 236:860-864.

7. Stewart M, Brown JB, Weston WW, et al. Patient-centered medicine: trans-forming the clinical method. Thousand Oaks, CA: Sage Publications, 1995.

8. Emanuel EJ, Emanuel LL. Four models of the physician-patient rela-tionship. JAMA 1992; 267:2221-2226.

9. Lazare A, Eisenthal S, Wasserman L. The customer approach to patient-hood. Attending to patient requests in a walk-in clinic. Arch GenPsychiatry 1975; 32:553-558.

10. Quill TE. Partnerships in patient care: a contractual approach. AnnIntern Med 1983; 98:228-234.

11. Nayfield SG, Bongiovanni GC, Alciati MH, et al. Statutory require-ments for disclosure of breast cancer treatment alternatives. J NatlCancer Inst 1994; 86:1202-1208.

12. Gattellari M, Butow PN, Tattersall MH. Sharing decisions in cancercare. Soc Sci Med 2001; 52:1865-1878.

13. Anderson RM, Funnell MM, Butler PM, et al. Patient empowerment.Results of a randomized controlled trial. Diabetes Care 1995;18:943-949.

14. Greenfield S, Kaplan SH, Ware JE Jr, et al. Patients’ participation inmedical care: effects on blood sugar control and quality of life in dia-betes. J Gen Intern Med 1988; 3:448-457.

15. Bertakis KD, Callahan EJ, Helms LJ, et al. Physician practice styles andpatient outcomes: differences between family practice and general inter-nal medicine. Med Care 1998; 36:879-891.

16. Greenfield S, Kaplan S, Ware JE Jr. Expanding patient involvement incare. Effects on patient outcomes. Ann Intern Med 1985; 102:520-528.

17. Kaplan SH, Greenfield S, Ware JE Jr. Assessing the effects of physician-patient interactions on the outcomes of chronic disease [published erra-tum appears in Med Care 1989; 27:679]. Med Care 1989; 27:S110-S127.

18. Rost KM, Flavin KS, Cole K, et al. Change in metabolic control andfunctional status after hospitalization. Impact of patient activationintervention in diabetic patients. Diabetes Care 1991; 14:881-889.

19. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs anddecisional preferences in women with breast cancer. JAMA 1997;277:1485-1492.

126

Supportive Cancer Therapy

Decision-Making Role Preferences in Patients with Cancer

20. Hack TF, Degner LF, Dyck DG. Relationship between preferences fordecisional control and illness information among women with breastcancer: a quantitative and qualitative analysis. Soc Sci Med 1994;39:279-289.

21. Beaver K, Luker KA, Owens RG, et al. Treatment decision making inwomen newly diagnosed with breast cancer. Cancer Nurs 1996; 19:8-19.

22. Bilodeau BA, Degner LF. Information needs, sources of information,and decisional roles in women with breast cancer. Oncol Nurs Forum1996; 23:691-696.

23. Wallberg B, Michelson H, Nystedt M, et al. Information needs andpreferences for participation in treatment decisions among Swedishbreast cancer patients. Acta Oncol 2000; 39:467-476.

24. Bruera E, Sweeney C, Calder K, et al. Patient preferences versus physi-cian perceptions of treatment decisions in cancer care. J Clin Oncol 2001;19:2883-2885.

25. Stewart DE, Wong F, Cheung AM, et al. Information needs and deci-sional preferences among women with ovarian cancer. Gynecol Oncol2000; 77:357-361.

26. Davison BJ, Gleave ME, Goldenberg SL, et al. Assessing informationand decision preferences of men with prostate cancer and their partners.Cancer Nurs 2002; 25:42-49.

27. Wong F, Stewart DE, Dancey J, et al. Men with prostate cancer: influ-ence of psychological factors on informational needs and decision mak-ing. J Psychosom Res 2000; 49:13-19.

28. Cassileth BR, Zupkis RV, Sutton-Smith K, et al. Information and participa-tion preferences among cancer patients. Ann Intern Med 1980; 92:832-836.

29. Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, et al. Cancerpatients: their desire for information and participation in treatmentdecisions. J R Soc Med 1989; 82:260-263.

30. Stiggelbout AM, Kiebert GM. A role for the sick role. Patient prefer-ences regarding information and participation in clinical decision-mak-ing. CMAJ 1997; 157:383-389.

31. Brett TD. Patients’ attitudes to prostate cancer. Aust Fam Physician1998; 27:(suppl 2):S84-S88.

32. DeAntoni EP. Eight years of “Prostate Cancer Awareness Week”: lessonsin screening and early detection. Prostate Cancer Education Council.Cancer 1997; 80:1845-1851.

33. Fitzpatrick P, Corcoran N, Fitzpatrick JM. Prostate cancer: how awareis the public? Br J Urol 1998; 82:43-48.

34. Masood S, Edwards PD, Arnold MJ. Breast health. Challenges andpromises. J Fla Med Assoc 1996; 83:459-465.

35. Mosconi P, Italian Forum of EUROPA DONNA. Consumer healthinformation: the role of breast cancer associations. Breast Cancer Res Treat2002; 76:89-94.

36. Petrisek AC, Laliberte LL, Allen SM, et al. The treatment decision-making process: age differences in a sample of women recently diag-nosed with nonrecurrent, early-stage breast cancer. Gerontologist 1997;37:598-608.

37. Rothenbacher D, Lutz MP, Porzsolt F. Treatment decisions in palliativecancer care: patients’ preferences for involvement and doctors’ knowl-edge about it. Eur J Cancer 1997; 33:1184-1189.

38. Karnofsky DA, Abelmann WH, Craver LF et al. The use of nitrogen mus-tards in the palliative treatment of carcinoma. Cancer 1948; 1:634-656.

39. Watson M, Greer S, Bliss J. Mental Adjustment to Cancer (MAC) Scale: Users’manual. Surrey, UK: CRC Psychological Medicine Research Group, 1989.

40. Bruera E, Willey JS, Palmer JL, et al. Treatment decisions for breast car-cinoma: patient preferences and physician perceptions. Cancer 2002;94:2076-2080.

41. Keating NL, Guadagnoli E, Landrum MB, et al. Treatment decisionmaking in early-stage breast cancer: should surgeons match patients’de-sired level of involvement? J Clin Oncol 2002; 20:1473-1479.

42. Davidson JR, Brundage MD, Feldman-Stewart D. Lung cancer treat-ment decisions: patients’ desires for participation and information.Psychooncology 1999; 8:511-520.