Psycho-Oncology
Psycho-Oncology (2009)
Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1671
Facing haematopoietic stem-cell transplantation:
do patients and their physicians agree regarding
the prognosis?
Norbert Grulke and Harald Bailer
,
Department of Psychosomatic Medicine and Psychotherapy, Ulm University, Ulm, Germany
Abstract
Objective: To evaluate the correlation and concordance between patients’ and physicians’
estimations of prognoses before initiation of the conditioning regimen for allogeneic
haematopoietic stem-cell transplantation.
Methods: A total of 123 patients and their attending physicians were asked to estimate a
prognosis on a six-point scale. The patients were also asked to fill out questionnaires addressing
their psychological state and coping.
Results: The mean prognostic estimations differed by 1.17 points (po0.001), with the
patients being more optimistic than the physicians. With respect to concordance: Pearson
correlation r5 0.024 (ns); unweighted kappa and kappa with linear weighting are 0.115 and
0.068, respectively. The prognostic estimates of the patients correlated with their psychological
state, but not with the objective disease- or treatment-related variables, whereas the physicians’
estimates were partially based on such objective factors.
Conclusions: A clear significant association between actual survival and the physicians’
estimates, but not the patients’ estimates, was observed. If agreement regarding the prognosis
exists, the relationship between physicians’ and patients’ estimates is probably non-linear.
Assessing one’s chances of being cured is a highly emotional task, and psychological processes
such as denial or repression most likely play a decisive role. Moreover, collusion between the
patient and physician may be inevitable in this situation. Whether it is desirable to gain
concordance and who will benefit from such efforts must be discussed and empirically studied.
Copyright r 2009 John Wiley & Sons, Ltd.
Keywords: cancer; informed consent; oncology; prognostication; survival
Introduction
For several haematological and oncological diseases,
such as leukaemia or lymphomas, allogeneic haema-
topoietic stem-cell transplantation (HSCT) offers the
patient the possibility of cure or a significant
extension of his or her survival time [1,2]. At the
same time, he or she has to accept the risk of dying
as a result of this life-threatening treatment and not
of the disease itself [3,4]. To ensure that patient
autonomy and self-determination are maintained, a
physician must inform the patient about diagnosis,
diagnostic procedures, and possible methods of
treatment, along with the respective risks and
chances associated with such procedures, as required
by law [5]. Thereafter, a patient should be able to
assess benefits and risks on his own and to decide for
or against HSCT. After admission, having signed the
informed consent form, we ought to assume that
patients and physicians agree to some degree about
the individual patient’s prognosis.
This report examines patient and physician
estimates of prognosis, after signing the informed
consent form. In general, patients tend to be more
optimistic than physicians about their chances of a
cure [6–9]. The concordance between physicians’
and patients’ prognostic estimates seems to be
weak [9]. Although physicians’ prognostic estima-
tions also tend to be inaccurate and too optimistic
[10–12], there is a clear statistical association
between their estimations and the actual survival
of the terminally ill [13–15]. This is most likely
because a combination of subjective prognostic
judgments and objective validated tools leads to
greater accuracy [16,17]. Less is known regarding
the accuracy of survival predictions provided by
the patients themselves. One study reported that
with increasing probability of poor outcome,
physicians modified their estimations, whereas
patients did not [9], that is, the physicians lowered
their expectations whereas the patients kept
their optimism. No studies have examined the
* Correspondence to:
Luisenklinik–Zentrum fu¨r
Verhaltensmedizin,
LuisenstraXe 56, D-78073
Bad Du¨rrheim, Germany.
E-mail: harald.bailer@
uni-ulm.de
Received: 15 April 2009
Revised: 23 October 2009
Accepted: 26 October 2009
Copyright r 2009 John Wiley & Sons, Ltd.

relationship between patients’ own prognostic
estimates and actual survival rates.
Our study is a part of a broader psycho-
oncological study that aimed at demonstrating
benefits for the patients if a psycho-social inter-
vention programme additional to routine care was
presented to the patients during inpatient time [18].
We did not scrutinise the individual discussion to
reach formal consent; rather, we took this process
as an unknown (‘black box’) and looked at the
correlation and concordance between patients’ and
physicians’ estimations of prognoses. Regarding
the cited literature, we expected that patients’
estimations were more optimistic than those of
the physicians, but hypothesised a significant
positive correlation between the two assessments.
Patients and methods
Patients
The study reported here was conducted in the
Transplantation Units of the University Hospitals
of Tu¨bingen and Ulm, Germany [18]. During the
28-month recruiting period, 230 patients were
admitted for allogeneic HSCT. Inclusion criteria
were as follows: age of 18 years or older, adequate
knowledge of the German language, and under-
going allogeneic HSCT for the first time (patients
who had previously undergone autologous HSCT
were not excluded). Because of the administrative
restrictions, eligible patients could be approached
by a member of the study team for the first time
only after admission. Independent of this study-
oriented contact, the attending physician informed
each patient about the forthcoming medical
procedures. After the patient provided written
informed consent for HSCT and participation in
the study, the patient and attending physician filled
out questionnaires. Two years after recruitment of
the last patient, the records of all patients were
made available for the determination of survival.
The Ethics Commission of Ulm University
approved the study.
Measures
Prognostic estimates
Both patients and physicians were asked, indepen-
dently of one another, to give a summarising
prognostic statement assessed on a six-point scale
following the marking system of German schools
(1 5 ‘very good’ and 6 5 ‘very poor’) [17]. Physi-
cians were asked to give a ‘prognosis’, whereas the
patients were asked to assess their ‘chances of cure’
because we assumed that ‘chances of cure’ would
be a more understandable term for the patient than
the technical term ‘prognosis’.
Patients were asked: ‘I assess my chances
of being cured as y’ (in German: ‘Meine
Heilungs-chancen scha¨tze ich ein alsy’).
Physicians were asked: ‘What is your overall
prognosis for the patient?’ (In German: ‘Wie
scha¨tzen Sie die Prognose des Patienten ein?’).
Psychological measures
The psycho-oncological study aimed to demon-
strate benefits for the patients if they were given a
psycho-social intervention program in addition to
routine care during inpatient treatment. The effects
on anxiety, depression, mood states, and coping
were monitored for this purpose. The following
established instruments were used and could be
evaluated for explorative purposes herein.
Anxiety and depression were measured using the
German version of the Hospital Anxiety and
Depression Scale, HADS [19], a well-validated
and widely used questionnaire [20,21]. The ques-
tionnaire contains two separable scales, depression
and anxiety, each with seven items requiring a
rating of 0–3. The score for each scale is calculated
by summing the seven ratings provided by the
scale.
Mood states were measured using the short form
of the German version of the Profile of Mood
States, POMS [22]. This validated instrument
[23,24] contains 35 items requiring a rating of
0–6. The scores for each of the four scales,
depression/anxiety (14 items), fatigue, vigour, and
anger (7 items each), are calculated by summing the
ratings provided by the scale.
Coping was assessed using the Mental Adjust-
ment to Cancer Scale, MACS [25]. This instrument
comprises 40 items requiring a rating of 1–4. Scores
for the five subscales, fighting spirit (16 items),
helplessness/hopelessness (6 items), anxious preoc-
cupation (9 items), fatalism (8 items), and avoidance
(1 item), are calculated by summing the answers
provided for the assigned items. A German version
of the MACS was used as described previously [26].
Statistics
Comparisons of arithmetic means were carried out
using t-tests for paired or unpaired samples as
appropriate or one-way analyses of variance.
Pearson correlation coefficients indicated associa-
tions between continuous variables. Curve estima-
tions were performed to explore the correlation
between patients’ and physicians’ estimates in
greater detail. Weighted and unweighted kappa
coefficients [27] were used to evaluate the concor-
dance between physicians’ and patients’ estimates.
Cox-regression analyses served to evaluate associa-
tions between covariates and overall survival.
Statistics were calculated using SPSS for Windows,
Copyright r 2009 John Wiley & Sons, Ltd. Psycho-Oncology (2009)
DOI: 10.1002/pon
N. Grulke and H. Bailer