TO SHARE OR NOT TO SHARE: PHYSICIANS AND PATIENTS APPROACHING CLINICAL UNCERTAINTY

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TO SHARE OR NOT TO SHARE: PHYSICIANS
AND PATIENTS APPROACHING CLINICAL
UNCERTAINTY
Claudio Lucchiari
Social and Political Department,
University of Milan,
Via Conservatorio 7, 20122 Milan
Claudio.lucchiari@unimi.it
Gabriella Pravettoni
Social and Political Department,
University of Milan,
Via Conservatorio 7, 20122 Milan
Gabriella.pravettoni@unimi.it
Gianluca Vago
Clinical Sciences Department,
University of Milan
Via Conservatorio 7, 20122 Milano
Gianluca.vago@unimi.it
TOPICS
Cognitive processes and clinical decision making
KEYWORDS
Shared decisions, medical decision making, brain
cancer
1. INTRODUCTION
Brain tumors contribute to about 2% of the cancer
mortality in men and 1.4% of the mortality in
women, and within the 15-34 age group, they are
the third most common cause of death due to
cancer. Despite recent advances in diagnosis, only
stight improvements in survival are evident. The
most common type of brain tumors are those of
neuroepithelial origin including glioblastoma
multiforme (39% of all brain tumors), a high-grade
(grade IV) astrocytic tumor that is almost always
debilitating and rapidly fatal (6% survive 2 years).
Over the last 20 years, the assessment of QoL has
become an important endpoint in cancer clinical
trials. Since, in primary brain cancer survival is
often limited and treatment diffcult to tolerate,
these are cri,tical issues.
Multivariable analyses found that age, performance
status, and extent of resection independently
associated with overall survival, whereas none of
the QOL measures were associated independently
with survival. Various studies, using different
methodologies and instruments have shown QoL to
be hold also during aggressive therapies such as
radio and chemotherapy.
Among the several definitions of QoL, we think
that two are particularly interesting. First of all,
QoL is the state of well- being that is a composite
of two components: the ability to perform everyday
activities that reflect physical, psychological, and
social well being; and patient satisfaction with
levels of functioning and control of the disease.
Furthermore, QoL should be considered as the gap
between the patient's expectations and
achievements. The smaller the gap, the higher the
quality of life. These two definitions highlight
important issues to be considered in analyzing the
relationship between shared decisions and QoL. In
fact, the assumption that physicians are in the best
position to evaluate and weigh decisions is
increasingly challenged (Eddy, 1990; Levine et al.,
1992; Charles and Whelan, 1999). The contexts of
clinical uncertainty are difficult to approach for the
physician. To what extent is it helpful to share
information and decisions ?
In a shared decision-making model, the
information exchange is two- way. At a minimum,

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the physician must inform the patient of all
information that is relevant to making the decision,
i.e. information about available treatment options,
the benefits and risks of each and potential effects
on the patient's psychological and social well
being. The patient needs to provide information to
the physician on issues raised above, e.g. their
values, preferences, life-style, beliefs and
knowledge about their illness and its treatment.
The first type of information exchange ensures that
all relevant treatment options are on the table; the
second ensures that both the physician and patient
evaluate these within the context of the patient's
specific situation and needs rather than as a
standard menu of options whose impact and
outcomes are assumed to be similar for clinically
similar patients.In a Paternalistic model, on the
other hand, : the exchange is largely one- way and
the direction is from physician to patient. The
physician must provide the patient with legally
required information on treatment options and
obtain informed consent to the treatment
recommended. The patient is a passive recipient.
This model assumes that the physician knows best
and will make the best treatment decision for the
patient.
The assumption that physicians are in the best
position to evaluate and weigh a proper therapy has
been increasingly challenged in the last 20 years
(Eddy, 1990; Levine et al., 1992; Lomas and Lavis,
1996). These contexts of clinical uncertainty are
difficult to approach for the physician, above all
when the illness may have severe
consequencessequels: to what extent is it helpful
to share information and decisions ? What is the
impact of the physician-patient information
exchange on QoL ?
In a previous study (Lucchiari et al., 2006), we
found a strong relationship between patients’ met
needs in the communication domain and perceived
QoL. In the present study, we aimed to support the
hypothesis that a therapeutic involvement, when
desired, may contribute to a better illness
adaptation and to an increased subjective QoL. For
this purpose, we used a more structured instrument
to measure patients’ needs and compliance .
2. METHODOLOGY
In order to analyze preferences and needs of
patients with highgrade gliomas, a cancer diagnosis
with poor life expectations, we collected data about
54 inpatients, treated between 2005 and 2007 at the
“Carlo Besta” National Neurological Institute in
Milan. We used both standardized instruments and
an half-structure interview concerning several
subjective domains about decision involvement,
quality of life and personal satisfaction. In
particular, we submitted the Need Evaluation
Questionnaire (Tamburini et al., 1999) to evaluate
the patient’s unmet need during the hospitalization.
The Functional Assessment Cancer Therapy for
brain cancer population (Fact-Br; Cella et al.,
2005) was used to assess health related quality of
life. The Karnofsky Performance Score was
attributed by the physician in charge.
The FACT-BR is a self-administered
questionnaire that measures QOL in brain tumour
patients. It is composed of a core questionnaire
called the Functional Assessment of Cancer
Therapy General (FACT-G) and a specific subscale
for brain. The FACT-G is composed of 27 items
on a five point points Likert scale (0 to 4). The
higher scores correspond to better self-perceived
QoL. The FACT-G is divided into four domains:
Physical Well-Being (7 items), Social/Family
Well-Being (7 items), Emotional Well-Being (6
items) and Functional Well-Being (7 items). The
range of the score is 0-28 or, for Emotional Well-
Being 0-24.
To differentiate groups of patients, we classified
them for preferences about shared decisions into
three clusters (low, medium and high involvement
need) through a cluster analyses. We, then,
compared groups for quality of life and other
subjective domains (such as therapeutic
satisfaction) through a nonparametric test.
Furthermore, we used an ad hoc questionnaire and
structured interview to evaluate the physician’s
perception of the patient’s compliance.
3. RESULTS
Our data showed that systematic differences were
present in quality of life, as measured by the Fact-
Br instrument, between the three clusters. Mean
values found were 55.2, 55.4 and 56.1 respectively
for low, medium and high clusters. Subjects in
cluster three (high involvement) reported higher
scores on satisfaction, confidence and trust in the
therapies. Data were not affected by the KPS value

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interaction. The physician’s perceptions of the
patient’s compliance were significantly different
between the three clusters. Subjects in cluster one
(low involvement) were considered to be
significantly less collaborative. The data were
confirmed also when we differentiated patients for
KPS level.
4. CONCLUSIONS
The present study confirmed previous research,
showing that shared decisions might contribute to
a better adaptation process to the illness. Patients
with a met need of high decisional involvement
seem to be more satisfied with the clinical context.
Furthermore, our data seem to confirm previous
studies showing that sharing decisions might help
the medical work by enhancing the patient’s
compliance (Schttner et al. 2004; Lucchiari et al.,
2006). Finally, the study suggests the need for a
more attuned decision-making process in
approaching clinical uncertainty. Physicians need
to better understand the patient’s preferences
related to information and decision sharing.
Involving patients in decision making is becoming
an important clinical task. However it’s important
to discriminate patients for preferences and needs.
So a brief but sistematic screening of patient’s
characteristics is required in medical settings where
important choices have to be made.
The present study suggests that shared decisions
might contribute to a better adaptation process to
the illness. Patients with a met need of high
decisional involvement seem to be more satisfied
with their course of therapy even also in a
difficult situation such as that of a malignant brain
cancer. Furthermore, it seems that sharing
decisions might help the medical work by
enhancing the patient’s compliance.
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