Insert Table 2 Determinants that influence patient’s treatment
decision according to the interviewees, classified in the three
categories of Bandura’s Social Cognitive theory9 about
here
According to the literature, emotions, such as being completely shaken,
a loss of concentration and fear induced by the diagnosis, make it more
difficult for a patient to participate in a treatment
decision.11-13 Many patients prefer a collaborative
role, which means that the patient and the clinician jointly decide on
the most appropriate treatment.14 For the determinant
‘a trusting relationship between the healthcare professional and the
patient,’ good communication skills of the part of the healthcare
professional, like empathy and mutual respect, are
important.11,15,16 Information regarding potential
impacts on daily life13,15,17 and a time out period to
consider treatment options are needed for patients to participate in
their treatment decisions.18,19 The patients’ need for
information being met in a way that patients understand and that is
tailored to them are also important conditions for patient
participation.16,18,20 However, in general, patients’
recall of medical information is often low; 40% to 80% of the medical
information presented at a clinical visit is forgotten by patients
immediately.21
During the observations, it was noticed that there was an overall
difference in the emotions associated with the diagnoses between the
option and decision talks. During the option talks, patients were
completely shaken, while during the decision talks, patients showed a
greater urge to survive and/or more hope for survival.
Patients (both in observations and interviews) indicated that they are
particularly interested in information about the impact of the treatment
options on their daily life long-term, more so than, for example, the
type of surgery. Interviewed patients mentioned that a trusting
relationship with the healthcare professional is essential for SDM. They
added that the reliability, dedication and professional attitude of the
healthcare professionals strengthens this relationship. The interviewed
healthcare professionals mentioned that asking questions related to the
patient’s quality of life and life goals in the option and decision
talks facilitates the patient’s participation in SDM and their ability
to make an informed decision. It also helps them to get a better view of
the patient’s context. The interviewed healthcare professionals also
emphasised that when patients are confronted with the diagnosis of
pancreatic cancer, emotions, such as loss of concentration, fear and
feeling completely shaken, could lead to a poor recall of information
and can make it more difficult for patients to participate in their
treatment decisions. The healthcare professionals suggested that
information recall can be improved during SDM by audio recording these
talks, which is not yet common practice. They also mentioned that a
reasonable time out period to consider the treatment options is needed
for patient participation in treatment decisions.
Discussion
Statement of principal findings
In this study, we found that the most prominent determinants that
influence a patient’s treatment decision during SDM are related to
‘emotions due to diagnosis’, ‘the patient’s participation role’, ‘a
trusting relationship between the healthcare professional and the
patient’ and ‘information provided by healthcare professionals’. Patient
characteristics and social support contribute less to a patient’s
treatment decisions. In addition, most patients prefer a collaborative
role in SDM. A collaborative role can be improved by supporting
information recall during the option talks, allowing for an adequate
time out period, and developing a trusting relationship between the
healthcare professional and the patient. Improved patient participation
leads to better SDM.
Interpretation within the context of the wider literature
Previous research has shown that SDM is supported by the knowledge
gained by patients and leads to more confidence in treatment decisions
and more active patient involvement. Moreover, in many situations,
informed patients opt for more conservative treatment
options.5 This may explain why 30% of the elderly
pancreatic cancer patients with comorbidities (see above) at the Radboud
University Medical Center did not opt for surgery in their decision
talks. These patients realised that, although they were indicated and
referred for curative surgery, the 5-year survival is still low and the
chances of complications with a significant impact on the quality of
life are high. In addition, the trustworthiness of the healthcare
professionals, and an open and honest discussion about the multiple
treatment options and their potential impacts on the patient’s daily
life, could have contributed to patients’ decision to not opt for
surgery. A trusting relationship between healthcare professionals and
patients, and communication tailored to the patient’s perspective, are
well-known facilitators of SDM.6
In our study, the observed and interviewed patients seemed to prefer
collaborative participation. However, patients’ participation roles can
vary between active, collaborative and
passive.13,16,18 Therefore, the clinicians’ knowledge
of the patients’ preferred role is important5,6 and
was mentioned as a determinant in our study. We also found that a time
out period is important for patients to consider treatment options and
should be an essential part of SDM. Patients need time to deliberate
with others (i.e., the family, a GP) after receiving the information
about treatment options to explore their preferences regarding these
options.5,11 A patient’s personal skills, such as the
ability to process information and to make
decisions19,
demographic characteristics (i.e.,
age, gender, educational level)13,14,20 and the
severity of the disease, especially in case of pancreatic cancer,
influence the participation role preferred by the
patient.14 We found an ambivalence on the part of
interviewees regarding the influence of demographic characteristics; in
this study, some interviewees mentioned that personality is a more
important determinant for patient participation than demographic
characteristics. Although the subcategory ‘social support’ was less
prominent in our study, this determinant has been shown to influence the
treatment decisions of patients with cancer.18,20,22
Strengths and limitations
A strength of this study is that the literature review has been
supplemented by interviews and observations. The literature review
enabled us to get an overview of the subject area and the interviews and
observational studies gave us in-depth information from the involved
healthcare professionals and patients. To ensure a broad range of
perspectives, different types of healthcare professionals were included.
The focus of our study was on patients with pancreatic cancer, but most
of the included studies also provided information about other types of
life-threatening cancers (e.g., lung, breast and colorectal cancers). A
generalisation of the determinants of SDM could be valuable for other
oncological practices.
A limitation is that only eight patients were observed and only two
patients were interviewed for reasons of feasibility. Patients can only
reflect on their own experiences and, to get a broader picture of
patients’ perspectives, more patients will need to be included in future
studies. Another limitation is that the evidence obtained from the
literature review depends upon the quality of the included studies. The
developed four-point score tool used here for the methodological
assessment of the quality of the studies was not validated.
Implications for clinical practice and research
In
this study, we identified several determinants that influence SDM in
patients with pancreatic cancer during their option and decision talks.
Insight into these determinants might be valuable for clinical practice,
as it provides suggestions for a more adequate SDM process. For example,
the current results show that it is important to establish a trusting
relationship with mutual respect to facilitate the preferred
participation role of a patient. In addition, tailor-made and
understandable information on treatments should be provided to patients,
with a focus on the potential consequences for their quality of life. A
time out period for patients is also needed for the consideration of
treatment options. Moreover, healthcare professionals must be aware,
especially during option talks, that patients may subsequently
experience a poor recall of the information discussed. To improve
information recall, further research on tools to aid in this process is
recommended. In this study, audio recording was mentioned as a potential
improvement tool for SDM. A future (qualitative) study might provide
insight into the appropriate tools to improve SDM, the facilitators and
barriers for their implementations, and the experiences of patients and
healthcare professionals with these tools.
Conclusions
Based on the determinants found in this study, better information
recall, tailor-made understandable information about treatment options
and the potential consequences for daily life, and the development of a
trusting relationship between patients and healthcare professionals, are
needed to support pancreatic cancer patients in their treatment
decisions. These determinants enable patients to take a collaborative
role in their care, which is typically the preferred role for patient
participation in SDM during option and decision talks.
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Acknowledgements
We thank the participants for their contribution to the study.
Conflict of interest
The authors declare that they have no competing interests.
Contributorship
MvdK, LD and AJ conceived the design of the study. LD and MH-S led the
writing of the first draft and revised this manuscript. LD collected the
data. LD, MH-S and AJ analysed and interpreted the data. MvdK, AJ, KvL,
PvW and IA contributed to the critical revision of the manuscript. All
authors approved the final version of the manuscript for publication.
Ethics and other permissions
The study design has been presented to the Medical Ethical Committee of
the Radboud University Medical Center (registration number: 2021/7316).
They declared ethical approval was not required under the Dutch national
law.
Funding
This research received no specific grant from any funding agency in the
public, commercial or not-for-profit sectors.
Tables
Table 1 Interviewees
characteristics