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Claudio Lucchiari
Social and Political Department,
University of Milan,
Via Conservatorio 7, 20122 Milan
Gabriella Pravettoni
Social and Political Department,
University of Milan,
Via Conservatorio 7, 20122 Milan
Gianluca Vago
Clinical Sciences Department,
University of Milan
Via Conservatorio 7, 20122 Milano
Cognitive processes and clinical decision making
Shared decisions, medical decision making, brain
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,
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
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 .
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.
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
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.
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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... The vision of a patient considered to be competent is widely spread in the North America and at the North Europe, where a patient's family assumes crucial position for decision-making process as well (Gaston & Mitchell, 2005 ). Nevertheless , the results emerged from a different studies show that there's necessi-ty of direct information in communication between a physician and a patient not only in Anglo-Saxon context (where the patients are usually informed on all important details), but also in South European context, where such a straightforwardness is generally considered to be more problematic (Varetto, 2004, Lucchiari, Pravettoni, Vago, & Boiardi, 2006 Lucchiari, Pravettoni, & Vago, 2008; Hubbard, Kidd, & Donaghy, 2008 ). Consequently , the medical system should be able to be attentive to patient's requirements and to satisfy their needs (Kaplan & Frosch, 2005). ...
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The research on medical decision-making is growing in three main directions: emergency treatment, treatment of chronic disorders, palliative care. The increasing occurrence of chronic diseases, in particular, cancer, has generated a new interest in decision-making procedures in this medical domain. Furthermore, the role of physicians working in different and complex settings and the role of patients and informal caregivers, who are supposed to play an active part in the treatment flow, are now important subjects of research in all parts of the world. In this framework, we conducted a survey on Italian physicians concerned with end of life care. The aim of this study was to describe which factors might influence the decision-making style in this context. Our data clearly showed that the medical decision-making process in incurable illnesses represents a complex and delicate context. Several modulating factors are present in order: medical, ethical, social, and cultural. Physicians, in formulating their own therapeutic decisions, seem to be influenced by three key elements: the patients' need for information and treatment involvement; the interaction between survival time and qualityof life, and the role of the informal caregiver (the family). Future research will be required to better understand both patients' and physicians' needs in this critical domain.
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Cancer disease modifies the order and the nature of needs connected with the state of health. The aim of this study was to evaluate the informative, psychological, social and practical needs of hospitalised cancer patients by means of the Needs Evaluation Questionnaire (NEQ), an instrument designed concisely for the convenience of patients and medical staff. Different samples of consecutive hospitalised cancer patients were involved in the various phases of designing the instrument: 30 patients for items identification, 101 patients for completeness and acceptability evaluation, 423 patients for construct validity and prevalence of needs; content and reliability analysis were performed on 2 subsamples of, respectively, 60 and 88 of the patients from the last sample. The validation analysis showed rather good reliability, structure validity and internal consistency of the questionnaire. The prevalence analysis showed that the most common needs were: 'more information about my future conditions' (74%); 'more information about my diagnosis' (56%); 'more information about the exams I am undergoing' (52%); 'more explanations on treatments' (51%); 'to have a better dialogue with clinicians' (57%); 'better services from the hospital' (bathrooms, meals, cleaning) (56%). The NEQ, self-completed by patients, has proven to be a useful clinical tool for obtaining a systematic and undistorted overview of the principal needs with respect to the state of health of patients. This instrument, which can also be administered by persons not belonging to the health care system such as volunteers, and inserted into the patients' hospital charts, could be used by the medical staff to identify the real needs of patients at an early stage.
In this paper we revisit and add elements to our earlier conceptual framework on shared treatment decision-making within the context of different decision-making approaches in the medical encounter (Charles, C., Gafni, A., Whelan, T., 1997. Shared decision-making in the medical encounter: what does it mean? (or, it takes at least two to tango). Social Science & Medicine 44, 681-692.). This revised framework (1) explicitly identifies different analytic steps in the treatment decision-making process; (2) provides a dynamic view of treatment decision-making by recognizing that the approach adopted at the outset of a medical encounter may change as the interaction evolves; (3) identifies decision-making approaches which lie between the three predominant models (paternalistic, shared and informed) and (4) has practical applications for clinical practice, research and medical education. Rather than advocating a particular approach, we emphasize the importance of flexibility in the way that physicians structure the decision-making process so that individual differences in patient preferences can be respected.
Anemia, frequently associated with cancer and cancer treatment, can use a variety of symptoms that diminish overall quality of life (QOL). Fatigue is the most commonly reported symptom among cancer patients and can significantly affect their daily lives. Using the Functional Assessment of Cancer Therapy-General (FACT-G) instrument, which measures general QOL, as a core questionnaire, 20 new questions related to the impact of fatigue and other anemia-related symptoms on patients with cancer were developed. Two new instruments were produced: the FACT-Fatigue (FACT-F), consisting of the FACT-G plus 13 fatigue items (the Fatigue Subscale), and the FACT-Anemia (FACT-An), consisting of the FACT-F plus seven items addressing other concerns related to anemia, but unrelated to fatigue. FACT-F and FACT-An demonstrated good stability (r = .87 for both) and strong internal consistency (alpha = .95 and .96, respectively). Test-retest reliability coefficients for the Fatigue Subscale and nonfatigue items also showed good stability (r = .84 to .90), and the Fatigue Subscale showed strong internal consistency (alpha = .93 to .95). Convergent and discriminant validity testing revealed a significantly positive relationship with other known measures of fatigue, a significant negative relationship with vigor, and an anticipated lack of relationship with social desirability. The FACT-An, FACT-F, and Fatigue Subscale were found to successfully discriminate patients based on hemoglobin (Hb) level and Eastern Cooperative Oncology Group (ECOG) performance status. When patients were divided into two groups by Hb levels, patients with Hb levels greater than 12 g/dL reported significantly less fatigue, fewer nonfatigue anemia symptoms, better physical well-being, better functional well-being, and higher general QOL. The FACT-An, the FACT-F, and the Fatigue Subscale are useful measures of QOL in cancer patients and add focus to the widespread clinical problems of anemia and fatigue.
We review the research both for and against patient participation in decision-making and conclude that (a) patients want to be informed of treatment alternatives, (b) they, in general, want to be involved in treatment decisions when more than one treatment alternative exists, and (c) the benefits of participation have not yet been clearly demonstrated in research studies. However, studies that have addressed the latter issue suffer from methodological problems such as small sample sizes and lack of control for potential confounding variables. We conclude that patient participation in decision-making is justified on humane grounds alone and that physicians should endeavor to engage patients in decision-making, albeit at varying degrees, when more than one effective treatment option exists. We propose that methods be developed to evaluate a patient's level of "readiness" to participate in decision-making and that interventions that match the patient's level of readiness be applied to increase participation.
Although primary brain tumors are relatively uncommon types of adult cancer, their location and resistance to treatment can significantly affect the patient's physical and cognitive function. Consequently, quality of life (QOL) issues are extremely important in the design and evaluation of clinical trials of high-grade glioma treatment. Although a number of studies have examined QOL in patients with primary brain tumors, very little is known about QOL in these patients. These studies often use either poorly validated instruments or tools, such as the Karnofsky performance scale, that do not fully evaluate the effects of the tumor on QOL. Recent attempts to better evaluate QOL in brain tumor patients have led to the development of brain tumor-specific QOL instruments, such as the European Organization for Research and Treatment of Cancer's Quality of Life Questionnaire-Brain Cancer Module and the Functional Assessment of Cancer Therapy-Brain, which offer more insight into the QOL aspects of cancer and its treatment. Instruments such as quality time without symptoms or toxicity (Q-TWiST) provide a means of integrating both quality of time of survival and absence of symptoms or toxicity.
Measurement of Health Related Quality of Life (HRQL) in brain tumour patients is important because brain tumours and brain tumour treatment usually affect physical, cognitive as well as emotional functioning. Measurement of HRQL is important for the understanding of disease burden and for the impact of specific tumour treatment. Quality of Life is a multidimensional concept consisting of physical, psychological and social phenomena. A large number of Quality of Life instruments have been developed. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and the MOS Short-Form Health Survey are two frequently used general HRQL instruments. A specific brain tumour scale is the Brain Cancer Module, which is designed to be used in combination with general questionnaires. HRQL measurement and neuropsychological examination were used to investigate the impact of radiotherapy and surgery in low-grade glioma patients and the influence of tumour volume, tumour localization, performance status and age in both low-grade and high-grade glioma patients.
Recent studies in the oncology literature have shown that spirituality, defined as the combination of existential and religious well-being (RWB), is related to both emotional well-being and quality of life. Indeed, spirituality may be particularly important in coping with the potential life threat of the disease. Based on Frankl's (1963) existential theory, in this study, we examined whether the relations between spirituality and emotional well-being are moderated by degree of perceived life threat (PLT). In addition, in this study, we examined the relative importance of religious versus existential well-being in relation to psychological adjustment. Patients diagnosed with various types of cancer (N = 95) completed questionnaires assessing spirituality, PLT, quality of life, and distress. Contrary to theoretical predictions, spirituality was associated with less distress and better quality of life regardless of PLT. Interestingly, existential but not RWB accounted for a major portion of the variance in these outcomes. Taken together, these findings suggest that spirituality, particularly the existential component, may be associated with reduced symptoms of distress in cancer patients regardless of life threat.