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\begin{document}

\title{Determinants of treatment decisions of patients with pancreatic cancer
in shared decision-making: A qualitative study}



\author[1]{Leonieke Daanen}%
\author[1]{Mirelle Hanskamp-Sebregts}%
\author[1]{Inger Abma}%
\author[1]{Philip van der Wees}%
\author[1]{Kees van Laarhoven}%
\author[2]{Anneke Jong}%
\author[1]{Marion van der Kolk}%
\affil[1]{Radboudumc}%
\affil[2]{University of Applied Sciences }%


\vspace{-1em}



  
  \date{May 28, 2024}


\begingroup
\let\center\flushleft
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\selectlanguage{english}
\begin{abstract}
Rationale and aims Shared decision-making is an approach whereby
clinicians and patients make decisions together using the best available
evidence. The most common cancers studied in relation to shared
decision-making are breast and prostate. However, little is known about
shared decision-making in patients with pancreatic cancer. We aimed to
identify the determinants that influence pancreatic cancer patients in
making treatment decisions during shared decision-making. Methods This
qualitative study was carried out at a pancreatic outpatient clinic in
an University Medical Center in the Netherlands. We reviewed the
literature, observed patients in their option and decision talks, and
interviewed healthcare professionals and patients. We used directed
content analysis for the literature review, interview and observational
data. To categorise the data, we used Bandura's Social Cognitive theory.
Results Related to Bandura's categories, we identified six
subcategories: information provided by healthcare professionals, the
patient's participation role, emotions due to the diagnosis, the
relationship between the healthcare professional and the patient,
patient characteristics and social support. The important determinants
that influenced patients' treatment decisions were a poor recall of
information due to the emotions associated with diagnosis (e.g.,
completely shaken, fear) and the patient's participation role preference
(mostly collaborative). Most patients preferred to discuss their
treatment options and the potential consequences for their daily life
with healthcare professionals. In addition, the determinants `a
well-informed patient', `a trusting relationship between the healthcare
professional and the patient' and `time out' were preconditions for
enabling patients to take part in shared decision-making. Patient
characteristics and social support had less of an influence on patient's
treatment decisions. Conclusions Better information recall, a trusting
relationship with healthcare professionals, and a time out period for
the consideration of treatment options are important determinants that
influence patients in their treatment decisions and their preferred
participation role during shared decision-making.%
\end{abstract}%



\sloppy


Determinants of treatment decisions of patients with pancreatic cancer
in shared decision-making: A qualitative study

Leonieke Daanen\textsuperscript{1 2*} , Mirelle
Hanskamp-Sebregts\textsuperscript{2}, Inger Abma\textsuperscript{3},
Philip van der Wees\textsuperscript{3}, Kees van
Laarhoven\textsuperscript{4}, Anneke de Jong\textsuperscript{5}, Marion
van der Kolk\textsuperscript{4}

* Corresponding author: Leonieke.Daanen@radboudumc.nl, + 31 24 36 17835

\textsuperscript{1} Radboud University Medical Center, Emergency
Department, internal postal code 760, PO Box 9101, 6500 HB Nijmegen, the
Netherlands

\textsuperscript{2} Radboud University Medical Center, Institute of
Quality Assurance and Patient Safety, internal postal code 348, PO Box
9101, 6500 HB Nijmegen, the Netherlands

\textsuperscript{3} Radboud Institute of Health Sciences, IQ healthcare,
internal postal code 114, PO Box 9101, 6500 HB Nijmegen, the Netherlands

\textsuperscript{4} Radboud University Medical Center, Department of
Surgery, internal postal code 618, PO Box 9101, 6500 HB Nijmegen, the
Netherlands

\textsuperscript{5} University of Applied Sciences, Master of Care
Trajectory Design, Heidelberglaan 8,

3584 CS Utrecht, the Netherlands

Abstract Word Count: 298 words

Manuscript Word Count: 3.128 words (excluding title page, abstract,
references and tables)

Abstract

\textbf{Rationale and aims}

Shared decision-making is an approach whereby clinicians and patients
make decisions together using the best available evidence. The most
common cancers studied in relation to shared decision-making are breast
and prostate. However, little is known about shared decision-making in
patients with pancreatic cancer. We aimed to identify the determinants
that influence pancreatic cancer patients in making treatment decisions
during shared decision-making.

\textbf{Methods}

This qualitative study was carried out at a pancreatic outpatient clinic
in an University Medical Center in the Netherlands. We reviewed the
literature, observed patients in their option and decision talks, and
interviewed healthcare professionals and patients. We used directed
content analysis for the literature review, interview and observational
data. To categorise the data, we used Bandura's Social Cognitive theory.

\textbf{Results}

Related to Bandura's categories, we identified six subcategories:
information provided by healthcare professionals, the patient's
participation role, emotions due to the diagnosis, the relationship
between the healthcare professional and the patient, patient
characteristics and social support. The important determinants that
influenced patients' treatment decisions were a poor recall of
information due to the emotions associated with diagnosis (e.g.,
completely shaken, fear) and the patient's participation role preference
(mostly collaborative). Most patients preferred to discuss their
treatment options and the potential consequences for their daily life
with healthcare professionals. In addition, the determinants `a
well-informed patient', `a trusting relationship between the healthcare
professional and the patient' and `time out' were preconditions for
enabling patients to take part in shared decision-making. Patient
characteristics and social support had less of an influence on patient's
treatment decisions.

\textbf{Conclusions}

Better information recall, a trusting relationship with healthcare
professionals, and a time out period for the consideration of treatment
options are important determinants that influence patients in their
treatment decisions and their preferred participation role during shared
decision-making.

\textbf{Keywords} : Shared decision-making, determinants, option talk,
decision talk, pancreatic neoplasm

Introduction

Patients with pancreatic cancer need to make difficult decisions about
intensive medical treatment weighed against their quality of life in a
short period of time. Pancreatic cancer carries a poor prognosis with an
overall survival rate of 2--7\% and has a great impact on a patient's
life.\textsuperscript{1,2} Over the period 1990-2017, the incidence of
patients with pancreatic cancer in the Netherlands increased by 2-3
times due to aging, overweight and diabetes.\textsuperscript{1} The only
curative option is resection of (a part of) the pancreas, often combined
with (neo)adjuvant chemotherapy. Resection of (a part of) the pancreas
is a major operation with the risk of severe complications, such as
sepsis, bleeding or wound infection.\textsuperscript{3} Long-term
consequences such as diabetes and digestive problems can also
occur.\textsuperscript{4} In addition, in almost 50\% of patients the
tumour relapses within 2 years after surgery.\textsuperscript{3} This
information, together with the up-to-date short-term outcome results of
these operations, should be shared with patients and considered in light
of patients' expectations regarding quality of life.

Shared decision-making (SDM) is an approach whereby clinicians and
patients make decisions together using the best available evidence.
Patients are encouraged to think about the available treatment options
and the likely benefits and harms of each, so that they can communicate
their preferences and help select the best treatment for
them.\textsuperscript{5}

While the most common cancers studied in relation to SDM are breast and
prostate, little is known about SDM in patients with pancreatic
cancer.\textsuperscript{6} Since 2017, healthcare professionals working
in an University Medical Center for pancreatic cancer in the Netherlands
have used SDM according to the revised three-talk model of Elwyn et
al..\textsuperscript{7} This SDM model is characterised by an option
talk, a time out period, and a decision talk. In the option talk, the
surgeon and case manager discuss the treatment options in terms of the
potential harms and benefits of each treatment. After this, the patient
is given a time out period of four days (reflection period). During the
time out, the patient considers the treatment options together with
their general practitioner (GP) or social network. In the decision talk,
the surgeon and case manager guide the patient to make a
preference-based treatment decision.

In the period of 2017--18, in the run up for the present study, a cohort
of 30 patients, characterised by (borderline) resectable pancreatic
cancer, an older age (over 75 years) and multiple comorbidities, was
followed at the outpatient clinic at the Radboud University Medical
Center. After starting with SDM as a communication model, almost 30\% of
these patients did not opt for surgery in their decision talks. Before
2017, treatment options and best supportive care were not discussed
according to the SDM model.\textsuperscript{5}

The observation that 30\% of these patients did not opt for surgery
after the implementation of the SDM model was the reason for initiating
the present study. We aimed to identify the determinants that influence
the treatment decisions of patients with pancreatic cancer during SDM.

Methods

Study design and setting

We performed a qualitative study consisting of a literature review on
SDM determinants, followed by interviews and observations to
substantiate the findings of the review with practical experiences. The
study was carried out at the outpatient clinic of the pancreas center in
the Department of Surgery at the Radboud University Medical Center in
the Netherlands. Approximately 350 patients are discussed annually by
the pancreatic tumour board (a multidisciplinary team of clinicians) at
this institution. Of these patients, approximately 200 have their option
and decision talks at the outpatient clinic.

The study was approved by the local medical ethical committee
(registration number: 2021/7316). There was no pre-existing relationship
between the researcher (LD) and the participants in the observations and
interviews. LD is an experienced nurse and trained in conducting
observations and interviews.

Literature review

We reviewed the literature on the determinants that influence patients
with pancreatic cancer during SDM. Search terms were developed to
capture three concepts: pancreatic neoplasms, patient participation and
patient decision-making. Appendix 1 provides a detailed list of the
search strings. Full-text studies published between 2000 and 2019 on
PubMed (including MEDLINE), CINAHL and PsycINFO were included. The
references of the included studies were manually checked, and the
authors'~personal files and the bibliographies of previously published
related reviews were searched to identify additional relevant studies
(snowballing). Only English-language studies were considered for this
review. The inclusion criteria for the studies were 1) the determinants
affecting SDM were described, 2) the population consisted of patients
with pancreatic cancer, and 3) the studied patients were over 18 years
old. Studies were excluded if only medical treatments were reported. The
titles and abstracts of the included studies were initially screened by
one researcher (LD). Subsequently, the full text of the selected studies
was screened by LD in consultation with a second researcher (MH-S).

Quality assessment of the selected literature

The methodological quality of the selected studies was assessed by LD in
consultation with a second researcher (MH-S). For the selected
qualitative studies, the Criteria for Reporting Qualitative Research
guidelines (COREQ)\textsuperscript{8} were used for evaluation. For
observational (cohort) studies, the Strengthening the Reporting of
Observational Studies in Epidemiology (STROBE)\textsuperscript{8} was
used. For systematic reviews, the Preferred Reporting Items for
Systematic Reviews and Meta-Analyses (PRISMA) were
used.\textsuperscript{8} For rating and standardising the methodological
assessments of the studies, we developed a four-point scoring form, with
studies rated from `Very good (++): \emph{Fully met the standards of
COREQ, STROBE, PRISMA'} to `Poor (- -): \emph{Assessment was not
possible, exclusion of the study} ' (e.g., the study design does not
match with the research data analysis).

Observations of patients

Patients who were referred for surgery at the outpatient clinic of the
Radboud University Medical Center were purposive sampled to represent
the patient population of this outpatient clinic in terms of the (no)
present of comorbidities and chemotherapy treatments. The included
patients had an option or decision talk.

Patients gave verbal informed consent to the researcher (LD) before
their option or decision talk. They gave permission for the observations
to be written up and published (including quotes). The researcher (LD)
observed the conversation and used a standardised observation list based
on the determinants found in the literature review (Appendix 2). LD made
field notes about the patients' context (e.g., social support, disease
stage) during the observations for correct interpretation of the data.
The observations took place in a regular consultation room in the period
September--December 2019.

Interviews with professionals and patients

A purposive sampling strategy was used to ensure a representative sample
of healthcare professionals in terms of positions (clinician, case
manager and physician assistant) and characteristics, such as their role
within SDM. LD approached patients with pancreatic cancer for an
interview after their option talk at the pancreatic outpatient clinic.
Patients were recruited based on their age (\textless{} 65 and [?] 65
years old) and gender. The patients were informed about the study by
e-mail and provided verbal informed consent at the beginning~of the
interview. Their verbal informed consent was audio recorded. The
interviews with the healthcare professionals took place at the hospital.
Patients were interviewed at their homes or at a hospital location with
sufficient privacy, depending on their preference. LD conducted the
semi-structured face-to-face interviews (45 min each) from September
2019 to January 2020. The interviews were guided by an interview topic
guide (see Appendix 3), audio recorded and then transcribed ad verbatim
by LD. The transcripts were returned to the interviewees for comment and
correction.

Data analysis

The study characteristics and outcomes, such as study design, sample,
population and methodology, were tabulated (see the data extraction form
in Appendix 4). The data from the literature review, observations and
interviews were analysed manually. We used Bandura's Social Cognitive
theory (SCT) to identify the determinants of SDM, since this theory has
shown to be helpful in explaining behaviour in relation to health
outcomes.\textsuperscript{9} Bandura emphasised that behaviour is the
result of continuous interactions between aspects of the social
environment, the person, and the person's behaviour.\textsuperscript{9}

The determinants of SDM in the included studies were identified and
analysed by LD in consultation with two researchers (MH-S and AJ). The
identified determinants of SDM were divided into the three categories
related to behaviour, the physical and socio-cultural environment and
the person\textsuperscript{9}, and further classified into
subcategories.

The interview transcripts and observation lists were systematically
analysed according to directed content
analysis.\textsuperscript{10}Relevant data were identified and
structured by initial codes based on Bandura's SCT\textsuperscript{9},
and open coding to create new codes (see Appendix 5). The coding took
place under the supervision of MH-S and AJ. Issues that occurred during
the analysis were resolved by consensus meetings.

The categories, subcategories and determinants from the literature
review, interviews and observations were merged, restructured and
tabulated. The determinants were substantiated with illustrative quotes.
We used the COREQ guideline to report the qualitative
data\textsuperscript{8} (see Appendix 6 for the completed checklist for
this study).

Results

Literature search

Our initial search for studies on the determinants influencing SDM
resulted in 141 studies (Figure 1). Additionally, 22 studies were
identified manually (snowballing). After scanning the titles, abstracts
and full texts, the methodologies were assessed. The final set consisted
of 13 studies: 6 qualitative studies, 4 quantitative studies and 3
systematic reviews (Appendix 7).

\emph{Insert Figure 1 PRISMA Flow chart of the study selection and
review process about here}

Characteristics of the participants

Eight patients were observed at the outpatient clinic: four patients
during their option talk and four patients during their decision talk
(see Table 1). Of these patients, four had finished their chemotherapy
treatment before surgery, two had no medical history and two also had
another oncological disease. Eight healthcare professionals working in
the pancreas center at the Radboud University Medical Center were
interviewed: four clinicians (an oncologist, a physician assistant, a
pancreas surgeon, and a geriatrician), three case managers and one GP
(for more details see Table 1). At this outpatient clinic, the surgeon,
case manager and GP had supporting roles at the pancreas center, and the
oncologist and geriatrician had an advisory role in SDM. Two patients,
one female of 53 years and one male of 67 years (with spouse), were
interviewed (see Table 1).

\emph{Insert Table 1 Interviewees characteristics about here}

Determinants of shared decision-making

The determinants influencing patients' treatment decisions during SDM
that were most often reported and mentioned by the interviewees were
related to the following subcategories: information provided by
healthcare professionals (n = 6), the patient's participation role (n =
5), emotions due to diagnosis (n = 3), the relationship between the
healthcare professional and the patient (n = 3), patient characteristics
(n = 2) and social support (n = 1; see Table 2).

\emph{Insert Table 2 Determinants that influence patient's treatment
decision according to the interviewees, classified in the three
categories of Bandura's Social Cognitive theory\textsuperscript{9} 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.\textsuperscript{11-13} Many patients prefer a collaborative
role, which means that the patient and the clinician jointly decide on
the most appropriate treatment.\textsuperscript{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.\textsuperscript{11,15,16} Information regarding potential
impacts on daily life\textsuperscript{13,15,17} and a time out period to
consider treatment options are needed for patients to participate in
their treatment decisions.\textsuperscript{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.\textsuperscript{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.\textsuperscript{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.\textsuperscript{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.\textsuperscript{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.\textsuperscript{13,16,18} Therefore, the clinicians' knowledge
of the patients' preferred role is important\textsuperscript{5,6} 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.\textsuperscript{5,11} A patient's personal skills, such as the
ability to process information and to make
decisions\textsuperscript{19}, demographic characteristics (i.e., age,
gender, educational level)\textsuperscript{13,14,20} and the severity of
the disease, especially in case of pancreatic cancer, influence the
participation role preferred by the patient.\textsuperscript{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.\textsuperscript{18,20,22}

\par\null

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.

\par\null

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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adults with cancer and models of decision making: a literature review.
Oncol Nurs Forum. 2012;39(1):E70-83.

17. Ankuda CK, Block SD, Cooper Z, Correll DJ, Hepner DL, Lasic M, et
al. Measuring critical deficits in shared decision making before
elective surgery. Patient Educ Couns. 2014;94(3):328-33.

18. Larnebratt A, Fomichov V, Bjornsson B, Sandstrom P, Larsson AL,
Drott J. Information is the key to successful participation for patients
receiving surgery for upper gastrointestinal cancer. European Journal of
Cancer Care. 2019;28(2).

19. Sainio C, Lauri S, Eriksson E. Cancer patients' views and
experiences of participation in care and decision making. Nurs Ethics.
2001;8(2):97-113.

20. Gaston CM, Mitchell G. Information giving and decision-making in
patients with advanced cancer: a systematic review. Soc Sci Med.
2005;61(10):2252-64.

21. Barr PJ, Dannenberg MD, Ganoe CH, Haslett W, Faill R, Hassanpour S,
et al. Sharing Annotated Audio Recordings of Clinic Visits With
Patients-Development of the Open Recording Automated Logging System
(ORALS): Study Protocol. JMIR Res Protoc. 2017;6(7):e121.

22. Geessink NH, Ofstad EH, Olde Rikkert MGM, van Goor H, Kasper J,
Schoon Y. Shared decision-making in older patients with colorectal or
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Patient Educ Couns. 2018;101(10):1767-74.

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

\emph{Table 1 Interviewees characteristics}\selectlanguage{english}
\begin{longtable}[]{@{}ll@{}}
\toprule
\begin{minipage}[b]{0.47\columnwidth}\raggedright\strut
Interviewee\strut
\end{minipage} & \begin{minipage}[b]{0.47\columnwidth}\raggedright\strut
Role in SDM + within the pancreatic care chain for patients who are
indicated for surgery.\strut
\end{minipage}\tabularnewline
\midrule
\endhead
\begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Surgeon\strut
\end{minipage} & \begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Conducts the option and decision talk with the patient at the outpatient
department. Discusses the treatment options during the option talk.
Operates on the patient. Participant of the multidisciplinary team:
discussion about treatment options.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Oncologist\strut
\end{minipage} & \begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Indicate and treatment chemotherapy. Participant of the
multidisciplinary team.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Geriatrician\strut
\end{minipage} & \begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Due to the age and co-morbidities of the patient, the geriatrician can
advise in patient's treatment options. Sometimes they have a
consultation with the patient, sometimes they are asked in
multidisciplinary discussion.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Physician Assistant\strut
\end{minipage} & \begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Perform adjuvant diagnostic invasive treatment. Participant of the
multidisciplinary team.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Case manager Department of surgery\strut
\end{minipage} & \begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Guiding and support the patient during the whole surgical process.
Participant of the multidisciplinary team.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Two case managers Department of oncology\strut
\end{minipage} & \begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Guiding and support the patient during the whole chemotherapy process.
Participant of the multidisciplinary team.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
General Practitioner\strut
\end{minipage} & \begin{minipage}[t]{0.48\columnwidth}\raggedright\strut
Referrer the patient to the hospital. Guiding and supporting the patient
in the home situation.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Two patients; Female 53 years old; Male 76 years old with spouse\strut
\end{minipage} & \begin{minipage}[t]{0.47\columnwidth}\raggedright\strut
Participation and discuss the treatment options in the option and
decision talks (SDM).\strut
\end{minipage}\tabularnewline
\bottomrule
\end{longtable}

\emph{+ SDM = shared decision-making}

\emph{Table 2 Determinants that influence patient's treatment decision
according to the interviewees, classified in the three categories of
Bandura's Social Cognitive theory\textsuperscript{9}}\selectlanguage{english}
\begin{longtable}[]{@{}llll@{}}
\toprule
\begin{minipage}[b]{0.22\columnwidth}\raggedright\strut
Category\strut
\end{minipage} & \begin{minipage}[b]{0.22\columnwidth}\raggedright\strut
Subcategory\strut
\end{minipage} & \begin{minipage}[b]{0.22\columnwidth}\raggedright\strut
Determinants \textsuperscript{references}\strut
\end{minipage} & \begin{minipage}[b]{0.22\columnwidth}\raggedright\strut
Illustrative quotes\strut
\end{minipage}\tabularnewline
\midrule
\endhead
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\emph{Person's behaviour}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Emotions due to diagnosis\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Poor information recall caused by: Loss of concentration, completely
shaken\textsuperscript{11,15, 20} Fear\textsuperscript{18,19,21}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Physician assistant: ``Once you drop the word cancer, imagine that
people will remember about 10\% of your conversation''. Case manager A:
``Fear of treatment and what is to come''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Hope\textsuperscript{11,12}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Patient A: ``I have always been positive about it, that it would work
out''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Urge to survive\textsuperscript{11,12}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Observation field note: ``During option talks people were completely
shaken, in contrast to the decision consultations where people showed
fighting spirit''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient's participation role\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient's preference of participation\textsuperscript{14,16,19,20}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Geriatrician: ``To know the role preference of a patient you have to get
to know the patient, you have to take the time for that''. Case manager
C: ``Which involvement role a patient takes has not so much to do with
education, background or intelligence or whatever. It's more, well, of
course your perspectives definitely play a role in that. But also
character and a bit of guts''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Impact of the disease itself\textsuperscript{13,14,16,19}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Case manager B: ``In contrast to other oncological chains, this patient
group is often really ill''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Impact of treatment on the patient\textsuperscript{11,13,15,17}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient B: ``I want to know the long-term consequences on my quality of
life when I make a treatment decision''. Patient C (observed): ''I am
not involved in the medical decision, who am I to say something about
it? They have studied for years. It is important to me that I know how
things will turn out, when I can do certain things again after the
operation''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Need for time out\textsuperscript{18,19}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Oncologist: ``People don't hear everything in a conversation. They don't
need to make a decision in one conversation and they need time to
think''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\emph{Physical/socio-cultural environment}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Relationship between healthcare professional and patient\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Trustworthiness and mutual respect\textsuperscript{11,15,17,19}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Geriatrician: ``In any case, it is known that there must be a
relationship of trust between the doctor and the patient. It is
important to test this as well, to see whether there is enough. How do
you do that? That's a good one. That is implicit, you notice it''.
Patient A: ''And it has to get along well, it has to feel good''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Open and honest communication\textsuperscript{11,13}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Patient A: ``When to trust a doctor? First of all honesty, directness.
Don't beat around the bush or make it more beautiful than it is. Just
say it like it is, honesty''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Values, standards and communication skills of the
physician\textsuperscript{16}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Geriatrician: ``The attitude or communication skills of doctors often
vary. More training on the job should take place here or through
intervision training of competences in shared decision-making''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Information provided by healthcare professional\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Repeat and spread information across multiple
talks\textsuperscript{11,15,17,19}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Case manager B: ''Often you have to repeat the information again; you
often mention the entire conversation again''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Audio recording of information\textsuperscript{11,20}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Case manager C: ``Patients come with questions, and especially when the
conversation has not been recorded, people have questions about what was
actually said because one has heard this and the other that''. Surgeon:
``It doesn't happen by default. Sometimes I offer it, but not always,
while I certainly see added value in it''. Patient B: ``I wasn't aware
of the possibility, but it could help me for information recall and
sharing information with my husband''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Impact on patient's daily life\textsuperscript{11,13,15,17}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Patient B: ``It helps when there's information given about the impact of
the treatment in my daily life, also in the long term''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Tailored made information\textsuperscript{11,15,17}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Patient D (observed): ``Yes I have looked on the internet, but that
didn't make me happy. There is also so much and it gets so complicated.
I stopped doing that''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Discuss multiple options\textsuperscript{19,20}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Case manager A: ''I think by providing information about what is and
what is not possible so that they know what they can choose and what not
to choose''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Role of case manager\textsuperscript{11}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Case manager C: ''A case manager provides a bit of clarification and
subtitles: what has all been said and what is the impact of the
treatment proposal and to what extent does this match your wishes and
expectations''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Social support\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Support\textsuperscript{11,12,17,18,20}\strut
\end{minipage} & \begin{minipage}[t]{0.22\columnwidth}\raggedright\strut
Case manager A: ``The social support system is extremely important
regarding how you get through a certain treatment. It is impressive what
comes your way. And then you need someone''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\emph{Person}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient's characteristics\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Demographic characteristics\textsuperscript{14,15,20,22,24}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
General practitioner: ''If someone has a low socioeconomic status, there
is not always shared decision-making. Then you are more likely to take a
paternalistic role''. Geriatrician: ``Non-Western migrants often have
family decisions. It is customary for the eldest son to consult with
others. You notice that it is very common that people listen to or
decide according to this person''.\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient's skills for shared decision-making\textsuperscript{19}\strut
\end{minipage} & \begin{minipage}[t]{0.24\columnwidth}\raggedright\strut
Patient A: ''If I make my decision, I will be completely behind it. I
support that. If you look back at your treatment process, you have had
to make various decisions. Have they been decisions that you still
support? Yes, I still support that. And the fact that you influenced it?
Happy that you are being listened to and that you can possibly
participate in decisions? That is positive. On the other hand, I think:
clinician, you should have told me what you think ''. Case manager C:
``Sometimes people find it very scary or difficult to make such a choice
and then you often see I call it ping pong. The doctor wants or tries to
make as little of the decision as possible and to place the decision
with the patient. Some patients cannot make that decision at all and
then they go back again: what would you do doctor?''\strut
\end{minipage}\tabularnewline
\bottomrule
\end{longtable}

Figure legends

\emph{Figure 1 PRISMA Flow chart of the study selection and review
process}

Supplementary material

Seven appendices are supplied separately:

Appendix 1: Search strings databases

Appendix 2: Observation list

Appendix 3: Topic guide interviewees

Appendix 4: Data extraction form

Appendix 5: Coding tree

Appendix 6: COREQ Checklist

Appendix 7: Study characteristics and methodological quality assessment

\textbf{Hosted file}

\verb`PRISMA flow chart.docx`  available at \url{https://authorea.com/users/740161/articles/713265-determinants-of-treatment-decisions-of-patients-with-pancreatic-cancer-in-shared-decision-making-a-qualitative-study}

\selectlanguage{english}
\FloatBarrier
\end{document}

