VOLUME 25 䡠 NUMBER 21 䡠 JULY 20 2007

JOURNAL OF CLINICAL ONCOLOGY O R I G I N A L R E P O R T

Doctors’ and Patients’ Preferences for Participation and

From the Departments of Radiation
Oncology and Medical Technology
Assessment, Radboud University
Nijmegen Medical Center, Nijmegen;
and Arnhems Radiotherapeutic Insti-
tute, Arnhem, the Netherlands.
Submitted May 24, 2006; accepted
April 20, 2007.
Supported in part by a grant from the
Dutch Cancer Society, Amsterdam, the
Netherlands (Project No. KUN 2001-2379
and KUN 2005-3457). The funding agree-
ment ensured the authors’ independence
in designing the study, interpreting the
data, and writing and publishing the re-
port. P.F.M.S. and J.J.V.T.-G. are sup-
ported by the sponsor.
Presented at the 10th Biennial Euro-
pean Meeting of the Society for Medi-
cal Decision Making, June 11-13, 2006,
Birmingham, United Kingdom.
Authors’ disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Clinical Trials Registry ISRCTN97145188.
Address reprint requests to Peep F.M.
Stalmeier, PhD, Radboud University
Nijmegen Medical Centre, MTA 138, PO
Box 9101, 6500 HB Nijmegen, the Neth-
erlands; e-mail: p.stalmeier@mta.umcn.nl.
Treatment in Curative Prostate Cancer Radiotherapy
Peep F.M. Stalmeier, Julia J. van Tol-Geerdink, Emile N.J.Th. van Lin, Erik Schimmel, Henk Huizenga,
Willem A.J. van Daal, and Jan-Willem Leer
A B S T R A C T
Purpose
Physicians hold opinions about unvoiced patient preferences, so-called substitute preferences.
We studied whether doctors can predict preferences of patients supported with a decision aid.
Methods
A total of 150 patients with prostate cancer facing radiotherapy were included. After the initial
consultation, without discussing any treatment choice, physicians gave substitute judgments for
patients’ decision-making and radiation dose preferences. Physicians knew that several weeks later,
patients would be empowered by a decision aid supporting a choice between two radiation doses
involving a trade-off between disease-free survival and adverse effects. Subsequently, patient
preferences for decision making (whether or not they wanted to choose a radiation dose) and for
treatment (low or high dose) were obtained. The chosen radiation dose actually was administered.
Results
Of the patients studied, 79% chose a treatment; physicians believed that 66% of the patients
wanted to choose. Agreement was poor (64%; ␬ ⫽ 0.13; P ⫽ .11), and was better as patients
became more hopeful (odds ratio [OR] ⫽ 4.4 per unit; P ⫽ .001) and as physicians’ experience
increased (OR ⫽ 1.09 per year; P ⫽ .02). Twenty percent of physicians’ preferences, 51% of
physicians’ substitute preferences, and 71% of patients’ preferences favored the lower dose;
agreement was again poor (70%; ␬ ⫽ 0.2; P ⫽ .03).
Conclusion
Physicians had problems predicting the preferences of patients empowered with a decision aid.
They slightly underestimated patients’ decision-making preferences, and underestimated patients’
preferences for the less toxic treatment. Counseling might be improved by first informing
patients—possibly using a decision aid— before discussing patient preferences.
J Clin Oncol 25:3096-3100. © 2007 by American Society of Clinical Oncology

© 2007 by American Society of Clinical

Oncology
0732-183X/07/2521-3096/$20.00
DOI: 10.1200/JCO.2006.07.4955
INTRODUCTION
When patients have unvoiced preferences, the phy-
sician decides in the patients’ best interest. To make
this decision, physicians may try to imagine or judge
the unvoiced preferences of patients. These so-called
substitute judgments have been studied in end-of-
life decision making. A general finding is that agree-
ment between substitute and patient preferences is
poor,1-5 suggesting that patients’ needs and stan-
dards for informed consent may not be met.
Other preferences such as preferences for deci-
sion making and treatment selection have been stud-
ied. Decision-making preferences reflect whether or
not the patient wants to choose himself, or leave
the decision to the physician. Treatment prefer-
ences reflect which medical treatment the patient
wants. During the consultation, physicians hold
opinions or substitute judgments about particular
patient preferences.
How are these opinions or substitute judg-
ments formed? It is known that physicians may use
their own preferences to form their substitute judg-
ments.1,4 It is also likely that substitute judgments
are formed by readily available patient characteris-
tics such as age, education, and disease severity. For
example, patients’ decision-making preferences are
positively associated with female sex and higher ed-
ucation, and decline with age and disease severity.6-9
It is plausible that these factors affect substitute pref-
erences held by physicians.
Substitute preferences are relevant for medical
decision making. They are likely to steer the infor-
mation detail and level of involvement that is offered
to patients. In clinical practice, physicians may as-
sume that they are a good judge of patients’ prefer-
ences and preferred roles for decision making are

3096
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Copyright © 2007 by the American Society of Clinical Oncology. All rights reserved.
 Preference Prediction in Prostate Cancer RT
not usually asked.10,11 Patients, in turn, ask few questions.12 Hence, the
delivery of information is largely physician driven.13,14 The amount of
information provided in practice is variable and often too incomplete
to facilitate patient decision making.14,15
The variation in information suggests that physicians know in
advance which patients want and which patients reject additional
involvement after being informed further. Our study question is
whether physicians indeed know these preferences. Given that the
physician judgment about patients’ involvement wishes precedes the
provision of additional information, physicians’ opinions were ob-
tained before additional information was provided to patients. The
preferences of patients were obtained after additional information was
provided because the physician judges what the patient wants after the
patient is informed further. In addition, factors affecting agreement
between substitute and patient preferences were sought. The context
was realistic; that is, the patients’ choice was carried out.
METHODS
Patients
Between June 2003 and February 2005, all patients with a primary pros-
tate tumor (T1-3, N0, M0) scheduled to undergo radiotherapy were included
in this study.16,17 Exclusion criteria were mental disorders and insufficient
knowledge of the Dutch language. Patients were enrolled in two locations: the
Radboud University Nijmegen Medical Centre (Nijmegen, the Netherlands)
and the Arnhems Radiotherapeutic Institute (Arnhem, the Netherlands).
Procedure
The study was approved by the research ethics committees of both
hospitals. In the first visit to the clinic, which lasted about 30 to 45 minutes, the
radiation oncologist informed eligible patients that this study focused on “how
to involve the opinion of patients in the treatment.” The radiation oncologist
then asked patients if the researcher could contact them by phone about this
study. Physicians did not discuss the choice between two radiation doses with
the patient. Physicians completed information about their (substitute) prefer-
ences after the patient left the clinic. In the phone call, the researcher told
patients that data were collected by means of an interview and several ques-
tionnaires. Patients who agreed to participate were sent a consent form and a
baseline questionnaire to be completed within a few days.
In the second visit, on average 19 days after the first visit, the researcher
interviewed the patients. In this interview, additional information was pro-
vided with a decision aid. After 2 days, decision-making and treatment pref-
erences were confirmed by telephone and noted in the patient’s medical
record. These latter responses were used for the analyses described in this
article. Subsequently, the preferred treatment (high- or low-dose radia-
tion) was delivered. Physicians knew that patients’ preferences were to be
obtained after receiving the decision aid; physicians were familiar with the
content of the decision aid.
Interview With Decision Aid
In the second visit, patients were told about the possibility of two treat-
ments in a semistructured interview. A decision aid explained the trade-off
between the risks and benefits of higher or lower radiation dose.16,17 A higher
dose leads to better (disease free) survival, but also to more adverse effects.
Patients received outcome and risk information on the two alternative treat-
ment options of 70 and 74 Gy effective radiation dose. A literature study
yielded data on the following outcomes18: 5-year overall survival, 5-year
disease-free survival, severe erectile dysfunction, severe late GI adverse effects,
and severe genitourinary adverse effects. Severe adverse effects were defined as
adverse effects that have an impact on daily activities. The probability that these
outcomes occurred (risk information) was presented subsequently in frequencies
(xof100patients)andbymeansofpiecharts.16 Theoutcomeandriskinformation
was also given to the patients in writing and could be taken home.
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The information was tailored to the patient characteristics in terms of
prognostic risk and age category. Four separate information groups were
distinguished. The first group consists of low-risk patients, who are character-
ized by a prostate-specific antigen (PSA) value less than 10 ng/mL, a Gleason
score less than 7, and a T status of T1 or T2. The other patients were divided
into age categories of younger than 57.5 years, 57.5 to 72.5 years, and older
than 72.5 years. After receiving the decision aid, 10% of the patients
requested and received an additional consultation with the physician to
discuss the choice.
Measures
Data were collected on several variables that were expected to affect
patients’ preferences. Most patient data were collected after the first visit.
Patient decision-making and treatment preferences were collected in the sec-
ond visit, during which the decision aid was presented. For each physician, we
recorded sex, years of training as a radiation oncologist, and the number of
patients included in the study.
Preferences of Clinicians
Substitute preferences were obtained at the end of the first visit; that is,
before patients were informed with the decision aid. Physicians were familiar
with the decision aid. With this background knowledge, a general instruction
asked physicians to take the patient perspective. Three measures were ob-
tained. The substitute decision-making preference was asked as follows: “Do
you believe that this patient wants to decide for himself between the low and
high-dose (yes/no)?” The substitute treatment preference was asked as follows:
“Assuming that the patient wants to choose, which dose do you believe that the
patient will choose (the low dose/the high dose)?” The physician’s own preference
for treatment was asked as follows: “According to your own opinion, which dose is
most suited for this patient (the low dose/the high dose/no preference)?”
Patient Variables
Preferences in patients. After receiving the decision aid, the patient
answered the decision-making preference question: “Do you want to choose
one of the two treatment options, or do you want to leave the decision to the
physician (choose/leave/don’t know)?” The patient treatment preference was
asked as follows: “Which dose do you prefer (the low dose/the high dose)?”
Responses were confirmed 3 days later by telephone; for the decision-making
question, the final response options were choose or leave.
Demographic variables and tumor characteristics. We collected self-
report data on demographic variables (age, marital status, having [grand]chil-
dren, working status, education, and religion). Tumor characteristics (T
status, pretreatment PSA value, and Gleason score) were extracted from the
medical records.
Psychological and well-being variables. The Problem-Solving Decision-
Making Scale19 assessed general decision-making preferences using two ques-
tions: “When the risks and benefits of radiotherapy are known to you, (1) who
decides how acceptable those risks and benefits are to you, and (2) who decides
on the choice?” The response scale ranged from “the doctor alone” (1), to “I
alone” (5). The second question was also analyzed separately and used as a
baseline decision-making preference. The personality traits autonomy and
conscientiousness were assessed with five items each from a shortened version
of a personality assessment instrument.20
General health in the previous week was assessed with an 11-point
horizontal rating scale ranging from worst imaginable (0) to best imaginable
health state (10). Hopelessness, avoidance, and fighting spirit were assessed
with the Mental Adjustment to Cancer scale.21 Cancer worries were assessed
with three questions: “Did you think of prostate cancer last week, did these
thoughts affect your mood, and did these thoughts affect your daily activi-
ties?”22,23 Data were obtained on anxiety and depression by means of the
Hospital Anxiety and Depression Scale.24 Prostate-specific quality of life was
assessed by means of the European Organisation for Research and Treatment
of Cancer Quality of Life Questionnaire PR25 prostate cancer module.25 It
contains the following scales: urinary symptoms, bowel symptoms, treatment
related adverse effects (bloatedness, hot flashes, edema, weight gain/loss), and
sexual functioning.
Knowledge. We asked patients to rate their knowledge (subjective
knowledge) on prostate cancer and on the advantages and disadvantages of
3097
 Stalmeier et al

radiotherapy on a 10-point scale (ranging from “very poor” to “excellent”).

Numeracy (ie, the ability to handle basic probability concepts) was assessed Table 1. Patient Characteristics
with three questions (eg, convert 1 in 1,000 to a percentage).26 Informed Consent
Information. Patients were asked to rate their preference for informa- Characteristic Yes (n ⫽ 150) No (n ⫽ 50)
tion on a scale ranging from 0 (“I want to know nothing about my illness and
treatment”) to 10 (“I want to know as much as possible concerning my illness Demographic items
and treatment”). The patients’ perception of the amount of information pro- Age, years
vided on prostate cancer and radiotherapy was rated on a 7-point scale ranging Mean 70 71
from “far too little information” to “far too much information.” Standard deviation 6 5
Living with partner 88 NA
Analysis Children 94 NA
Agreement between patients’ preferences and physicians’ substitute College education or more 36 NA
preferences is examined for decision making and treatment preferences sepa- Religion or philosophy of life 78 NA
rately. Agreement can arise from chance; if one predicts heads all the time, 50% Medical variables
of coin tosses are predicted correctly. A measure correcting for chance agree- T status
ment is the ␬ statistic, ranging from 0 to 1.27,28 A ␬ of 0.2, 0.5, and 0.8 indicates T1 16 19
poor, moderate, and good agreement, respectively. In bivariate and multivar- T2 36 38
iate analyses, associations were sought between agreement and the physician T3 48 44
variables (eg, years of training and number of patients contributed) and pa- PSA, ng/mL
tient variables (eg, demographic, medical, psychological, knowledge and in- Mean 24 22
formation) described above. In case of missing data, scale values were Standard deviation 31 23
calculated, if at least half of the items were filled out, by imputing the mean of Gleason score, mean 6.5 6.6
the remaining items. For bivariate analyses using ␹2 tests, continuous data Low-risk status (ie, T1-2, PSA ⬍ 10 19 13
were dichotomized using the median split. For PSA values, a cutoff of 10 ␮g/L, and Gleason score ⬍ 7)
ng/mL was used; for Gleason scores, a cutoff of 7 was used. In addition, anxiety Hormone deprivation therapy 74 83
and depression were dichotomized by use of a clinical cutoff point of 8. Location
Dichotimized variables associated with agreement at a level of P ⬍ .20 Arnhem 49 40
were included whenever possible as continuous variables in a hierarchical Nijmegen 51 60
model for binary outcomes (procedure GENMOD; SAS software, version 8.2;
Abbreviations: NA, information not available; PSA, prostate-specific antigen.
SAS Institute, Cary, NC) with agreement as the dependent variable. This
model accounted for patients clustering under physicians. Generalized esti-
mating equations estimates were used to test for significance.

(␬ ⫽ 0.26; P ⫽ .02). Similarly, in more hopeful patients, overall

RESULTS agreement improved to 75% but chance corrected agreement re-
mained poor (␬ ⫽ 0.23; P ⫽ .02). Agreement was also better in
patients with a PSA value greater than 10 ng/mL (OR ⫽ 2.1; P ⫽ .003)
During the inclusion period, a total of 544 patients came for a and in patients without bladder or bowel surgery (OR ⫽ 2.1; P ⫽ .03).
consultation. More than 60% of these patients were not eligible Surprisingly, not even patients’ own baseline decision-making
because of local or distant metastases (n ⫽ 121), previous radical preference agreed with their final choice behavior (agreement ⫽ 64%;
prostatectomy (n ⫽ 94), avoidance of external-beam radiotherapy ␬ ⫽ 0.13; P ⫽ .1).
(n ⫽ 36), cognitive/mental problems (n ⫽ 17), insufficient knowl-
Treatment Preferences
edge of the Dutch language (n ⫽ 10), and other reasons (n ⫽ 31).
Thirty-one patients did not want to choose, thus treatment pref-
The remaining 200 patients were asked to participate in the study.
erences were not recorded; hence, agreement with physicians’ substi-
One hundred fifty (75%) of these patients provided informed
tute preferences was undefined. In addition, physicians did not
consent and were included in the study. Patient characteristics are
categorized by informed consent in Table 1; the two groups did not
differ. Physician characteristics are listed in Table 2. Because both
centers were training hospitals, physicians differed in experience and Table 2. Physician Characteristics
number of patients seen for this study. Characteristic No.
Sex
Decision-Making Preferences
Female 6
The results for decision-making preferences are listed in Table 3. Male 9
Substitute preferences for decision making were available in 142 of 150 Years of experience as a physician
physician-patient pairs. The overall agreement in Table 3 is 64%. The Mean 9
agreement corrected for chance agreement, as expressed by ␬, is 0.13 Standard deviation 7
(P ⫽ .11). This indicates a poor agreement. Hierarchical analyses Median 6
Range 1-21
indicated that agreement for decision-making preferences improved Patients per physicianⴱ
with years of training of the radiation oncologist (odds ratio Mean 10
[OR] ⫽ 1.09 for each year; P ⫽ .02); agreement improved as patients Standard deviation 11
became more hopeful (OR ⫽ 4.4 for each unit change; P ⫽ .001), Median 7
hopelessness values varied between 1 and 3, and the possible range was Range 1-42
ⴱ
0 to 3. In physicians with more than 6 years of experience, overall Number of patients included in this study by a physician.
agreement improved but chance corrected agreement remained poor

3098 JOURNAL OF CLINICAL ONCOLOGY

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 Preference Prediction in Prostate Cancer RT
Table 3. Substitute and Patient Preferences for Participation
Patient Preferences
Substitute Physician Preferences Active Passive Total
Active 77 16 93
Passive 35 14 49
Total 112 30 142
% 79 21
provide substitute treatment preferences for 25 patients. As a result,
agreement was undefined in 49 of 150 patients, leaving 101 physician-
patient pairs (Table 4). The overall agreement was 60% (␬ ⫽ 0.20;
P ⫽ .03), indicating that physicians are able to predict beyond
chance which treatment the patient desires; however, the agreement
was poor. Agreement was equally poor for male and female physi-
cians. Hierarchical models for treatment preference agreement were
not interpretable because the significance of determinants varied
strongly depending on the variables included in the model.
Physicians’ substitute treatment preferences were associated
strongly with their own preferred treatment plan (␹2 ⫽ 10; P ⫽ .001;
Table 5). Additional analyses (data not shown) showed that physi-
cians’ own preferences are driven by the medical status of the patient,
such as higher T status. Male physicians were four times more likely to
prefer the higher dose (␹2 ⫽ 15; P ⬍ .001).
DISCUSSION
Do physicians know the preferences of empowered patients?
Decision-making and treatment preferences were assessed in phy-
sicians, and afterward in patients empowered by a decision aid.
Slightly more patients (79%) wanted to decide themselves than the
number expected by physicians (66%). Physicians could not indi-
cate reliably which patients wanted to choose. Patients could not
foresee their final preferences either. Regarding treatment prefer-
ences, patients favored the less toxic treatment (lower dose) more
frequently (71%) than expected by physicians (51%). Physicians
foresaw patients’ treatment preferences to some extent, but agree-
ment was poor. Physicians’ own preference favored the lower dose
in only 20% of the patients. Strong points of this study are that a
concrete therapeutic choice was made by patients facing treatment,
and that the treatment chosen was actually delivered.
The agreement between physician and patient preferences was
poor. This has been observed before.1-4,29-31 One could argue that
the low agreement arises because the clinicians did not discuss the
Table 4. Substitute and Patient Treatment Preferences
Patient Preferences
Substitute Physician Preferences Low High
Low 42 10
High 30 19
Total 72 29
NOTE. Low and high refer to radiation intensity.
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Table 5. Substitute and Physician Treatment Preferences
Substitute Physician Preferences
% Physician Preferences Low High Total %
66 Low 20 5 25 20
34 High 36 46 82 66
No preference 8 9 17 14
Total 64 60 124
% 52 48
NOTE. Low and high refer to radiation intensity.
treatment choice with patients. This procedure, however, followed
from our research rationale. In practice, physicians may vary infor-
mation or involvement using their judgment of patient preferences for
decision making. The judgment about patient preferences is made
before extra information is provided to patients. This study intended
to assess the accuracy of such prior judgments. Accordingly, patients’
preferences were obtained after decision making was facilitated, and
physicians’ substitute preferences were measured before decision
making was facilitated.
Agreement was not uniformly poor. In more experienced
physicians, agreement regarding decision making improved: this is
a new finding, and it provides evidence for the claim of older
physicians that experience improves their judgments of patients. In
more hopeful patients, agreement also improved: this finding is
also new and deserves additional interpretation. The rates of pa-
tient and substitute preferences in more or less hopeful patients
were considered, but could not explain that agreement improves in
more hopeful patients. An alternative explanation takes into ac-
count communication patterns in less hopeful patients. Less hope-
ful patients are more anxious and depressed. Such patients utter
more concerns, requests, and receive more information, directives,
empathy, and longer visits.32-35 Hence, such patients are more
demanding,34 giving physicians less time to judge patient prefer-
ences, which in turn leads to a lower agreement.
Other comments can be made. Physicians often believed they
were guessing about patients’ preferences. They would have pre-
ferred to use a “don’t know” category while judging patients’
decision-making and treatment preferences. “Don’t know” re-
sponses, unfortunately, can not be analyzed, leading to a loss of
valuable data. More importantly, by being forced to guess, some
residual agreement might still be detected. In any case, varying the
amount of information is a daily routine in clinical practice, so
forcing a judgment is not unreasonable. One may argue further
that the decision aid is new for physicians, thus confusing their
judgment. One should consider, however, that several physicians
were involved in the design of the decision aid. All physicians knew
the content of the decision aid.
These findings raise concerns about the provision of information
and the incorporation of patient preferences in decision making.
Total There are two implications. First, the findings illustrate that physicians
52 need help to determine patient preferences. Physicians can discuss the
49 preferences of the patient, but this is not always common practice.
101 In such a discussion, decision aids may improve agreement36 be-
cause they present decision-making information in a format
that patients understand, thus helping patients to develop and state
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 Stalmeier et al

their preferences. Second, patients could not foresee their own

decision-making preferences. This raises the issue whether decision-
making preferences should be obtained before (uninformed prefer-
ences) or after (informed preferences) information disclosure. The
use of uninformed preferences overlooks the important role informa-
tion or decision aids play in creating more active patients. Asking
patient preferences after having shown a decision aid will satisfy stan-
dards for informed consent and patient autonomy.
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Conception and design: Peep F.M. Stalmeier, Julia J. van Tol-Geerdink, Emile
N.J.Th. van Lin, Henk Huizenga, Willem A.J. van Daal, Jan-Willem Leer
Financial support: Peep F.M. Stalmeier, Henk Huizenga, Willem A.J.
van Daal, Jan-Willem Leer
Administrative support: Willem A.J. van Daal, Jan-Willem Leer
Provision of study materials or patients: Julia J. van Tol-Geerdink,
Emile N.J.Th. van Lin, Erik Schimmel
Collection and assembly of data: Peep F.M. Stalmeier, Julia J. van Tol-Geerdink
Data analysis and interpretation: Peep F.M. Stalmeier, Julia J. van Tol-Geerdink
Manuscript writing: Peep F.M. Stalmeier, Julia J. van Tol-Geerdink
Final approval of manuscript: Peep F.M. Stalmeier, Julia J. van
Tol-Geerdink, Emile N.J.Th. van Lin, Erik Schimmel, Henk Huizenga,
Willem A.J. van Daal, Jan-Willem Leer

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