=Paper=
{{Paper
|id=Vol-2001/paper1
|storemode=property
|title=Breast cancer patients experiences with information and communication in cancer disease trajectories
|pdfUrl=https://ceur-ws.org/Vol-2001/paper1.pdf
|volume=Vol-2001
|authors=Berit J Brattheim,Kari Sand,Heidi Gilstad,Ragna Stalsberg,Steinar Lundgren,Randi J Reidunsdatter
|dblpUrl=https://dblp.org/rec/conf/pahi/BrattheimSGSLR17
}}
==Breast cancer patients experiences with information and communication in cancer disease trajectories==
https://ceur-ws.org/Vol-2001/paper1.pdf
Breast Cancer Patients’ Experiences with Information and
Communication in Cancer Disease Trajectories
Berit J Brattheim1, Kari Sand2, Heidi Gilstad3, Ragna Stalsberg1, Steinar
Lundgren4 and Randi J Reidunsdatter1
1
Department of Circulation and Medical Imaging, Faculty of Medicine and Health
Sciences, Norwegian University of Science and Technology (NTNU), Norway
2
European Palliative Care Research Centre (PRC), Department of Cancer Research and
Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of
Science and Technology (NTNU), and St. Olavs Hospital, Trondheim University Hospital,
Norway
3
Health Informatics Research Group, Department of Neuromedicine and Movement
Sciences, Faculty of Medicine and Health Sciences, Norwegian University of Science and
Technology (NTNU), Norway
4
Department of Oncology, St. Olavs Hospital, Trondheim University Hospital, Norway
Abstract. Patients’ experiences have been used as an indicator for hospital
quality for a long time. The concept of patient experiences has many facets. One
aspect of particular importance for optimal treatment and patients’ quality of life
is efficient and understandable information and communication
between patients and health professionals. In this paper, we look closer into
patients’ experiences in breast cancer care by following patients through their
narratives related to their treatment trajectory 7–8 years after diagnosis. The
specific aim has been to explore their perceptions and experiences regarding
received information from and communication with health professionals during
their breast cancer disease trajectory in a long-term perspective. Findings show
that even though the participants expressed high levels of satisfaction with care,
they also highlighted elements that they experienced as problematic during their
treatment trajectory. Three major themes emerged: 1) the need to be taken
seriously and for immediate action; 2) evolving information needs across stages
of treatment; and 3) finding the right network.
1 Introduction
Patient experiences are one of the key elements of quality in health care [1]. They
have long been used as indicators for hospital quality to inform clinical practice about
treatment effects and as a valuable source for quality improvement processes [2-4].
Cancer care specifically emphasizes patient experiences as an important instrument
for improving care quality and for reducing the future burden of cancer [5, 6]. The
concept of patient experiences is, however, multifaceted, including aspects such as
organizational issues, care staff and therapeutic variation [7]. One aspect of particular
importance is the provision of efficient and understandable
Copyright © 2017 by the paper's authors. Copying permitted for private and academic
purposes. In: H. Gilstad, S. Khodambashi, J. Bjerkan (eds.):
Proceedings of the 4th European Workshop on Practical Aspects of Health Informatics (PAHI
2017), Levanger, Norway, MAY-2017, published at http://ceur-ws.org
information and communication between patients and health professionals [5]. When
patients are well informed about disease, therapies and related effects, they can play
an important role in increasing the effectiveness of the health-care system [8]. The
patient and citizen role in communication with health-care personnel (HCP) has
changed over recent decades; it is now expected by the patients as well as the health-
care providers that patients should be actively involved in communication and
decisions about their own health [9]. This may improve the sense of empowerment,
the patient’s understanding of personal health condition and provide them with insight
sufficient to take medication or undergo treatment.
Technology is likely to be one of the enduring pillars of future health and care
services. Information technology is expected to enhance the quality of care and patient
safety further. New online digital services will give patients more opportunities to
make active choices regarding their own health and thereby influence what kind of
health services are available [10]. Previous studies on information and communication
throughout the cancer care trajectory show - among others - that the Internet has
become an important source for providing information to cancer patients [11-15].
Breast cancer is the most common cancer among women, representing with around
3,400 new cases in Norway each year. There are several studies on breast cancer
addressing late effects of cancer treatment [16], quality of life/health-related quality of
life [17, 18] and patient safety [1] as well as challenges related to information and
communication [19-22]. Moreover, many studies emphasize the importance of
learning from patients’ experiences [23-25] by showing that breast cancer patients
who are actively involved in making health decisions report higher satisfaction with
care, increased quality of life and functioning, and fewer side effects.
When investigating communication and information in breast cancer care, it seems
relevant to use the term ‘disease trajectory’ in a more extended way than is usually
done. The actual follow-up phase lasts from five to ten years. However, many patients
experience late effects, such as fatigue and impaired physical- and mental functioning
[26], resulting in difficulties in returning to work [27]. Consequently, the disease
trajectory can actually be lifelong and one anticipates that experiences, evaluations,
needs and preferences are likely to change throughout this period. Thus, in this paper,
cancer disease trajectory is defined as the period from the initial signs, symptoms or
concerns regarding breast cancer; through the diagnostic workup, treatment, and
follow-up in specialist and primary health care; to after the follow-up period is
completed and daily life as a permanent cancer survivor appears [28].
Recommendations or instructions regarding patient information throughout the
disease trajectory are to a limited degree included in the Norwegian national
guidelines for breast cancer. Only one paragraph is specifically addressing patient
information, and this information is about breast reconstruction surgery, and
scheduled to the first follow-up appointment after surgery [29]. Thus, it is a need for
further knowledge on patient information in lifelong disease trajectories.
The aim of this study has been to investigate patients’ experiences regarding
information from and communication with health professionals during their breast
cancer disease trajectory, from a long-term perspective.
7
2 Material and method
Health-care setting: The present study is a sub-study from a larger prospective
cohort study including 250 breast cancer patients enrolled in an 8-year follow-up
programme at a cancer outpatient facility located at Trondheim University hospital
owned by Central Regional Health Authority, Norway.
Study design: For this sub-study, we followed an explorative, qualitative
approach with the use of semi-structured interviews. The purpose was to encourage
the women to talk about the issues related to information and communication, but also
to allow them to reflect freely upon their experiences.
Data collection and analysis: In total, we conducted 37 interviews between
December 2012 and August 2015. The interview guide was worded to bring out the
women’s views of and experiences with their prior breast cancer treatment trajectory
through questions on how and when the cancer was detected, the type of treatment
received, and how they experienced the care they received during different stages of
the treatment trajectory, including the time after hospital discharge. Each interview
lasted 30–100 minutes and was tape-recorded and later transcribed for analysis.
The analysis used a combination of deductive and inductive reasoning. Initial
inductive analyses revealed that information and communication were recurrent
themes in all interviews; hence, we decided to pursue this further. The specific
analysis for this paper first identified all passages of the transcripts in which
participants told about their experiences regarding information and communication.
Thereafter, we deductively analysed these passages following a preliminary topical
structure based on the disease trajectory phases the participants referred to. Finally,
we worked on meaning condensation/coding and categorized the material carefully
into broad themes.
Ethical issues: The main study obtained approval from the Regional Committee
for Medical and Health Research Ethics (REC Central 2009/108.4.2006.2856) and by
the Norwegian Data Inspectorate. The responsible oncologist at the outpatient clinic
recruited the participants for this interview study. All participants signed an informed
consent form.
2.1 Participant characteristics
The age of the participants ranged from 45 to 86 years at the time of the interview,
and most of them were married or cohabited. Former or current professional affiliation
included cleaning, sales, service, associate professionals, academic professionals and
executives. Cancer treatment varied widely across the interviewees (see Table 1).
The informants are referred to as («A»), («B»), («C») etc. in the text below to
maintain their anonymity.
8
Table 1: Treatment characteristics of the 37 participants
Types of therapy N (%)
Surgery
Breast conserving 20 (54)
Radical (mastectomy) 17 (46)
Chemotherapy 25 (68)
Endocrine (anti-hormonal) treatment 13 (35)
Immunotherapy (Herceptin) 12 (32)
3 Findings
In our study, most women were satisfied with the patient–staff relationship and the
care they received. Despite this positive attitude, the women highlighted
communication-related issues that they evaluated as problematic or challenging
regarding interactions with the health-care services. Moreover, they reported problems
or challenges from various or all phases of the disease trajectory (Table 2): from the
detection of initial symptoms, through the mammography screening, biopsies,
receiving bad news, primary and adjuvant treatment at the hospital, to the follow-up
care at the hospital or with the GP, rehabilitation programmes and daily life
afterwards. Three major themes that emerged from the analysis of our interview data
will be further addressed in this paper: 1) the need to be taken seriously and for
immediate action; 2) evolving information needs across the stages of treatment; and 3)
finding the right network.
Table 2: Information needs throughout the disease trajectory
To be taken seriously
Patients’ information Perfect timing of information – not
and communication too soon and not too late
needs Unambiguous and accurate
information, about diagnosis,
treatment plan, side effects (acute and
late), follow-up and rehabilitation
HCP to talk to, face to face, in various
phases of the disease trajectory
Help by family/partner to remember
information
Coordinated information between
HCP
Actively: If you need information, you
How patients meet ask and receive answers from HCP
information needs Passively: You wait for someone to
9
inform you/You do as you are told
Information by coincidences
3.1 The need to be taken seriously and for immediate action
The informants reported that it is important that they are taken seriously by the HCPs
early in the trajectory, i.e. during the diagnostic workup. This means that HCP pay
attention to the patient’s symptoms and concerns, and provide information and
messages as scheduled. Many of the participants experienced individual delays before
the initiation of diagnosis and treatment, as illustrated by the following quote:
‘It was a bit difficult to get in [to the health-care system], because I went to my GP
and he didn’t want to refer me to the hospital, so I had to go to a private clinic (…).
He was not in a hurry. He didn’t take it seriously enough to even examine the lumps’
(«A»).
One of the participants had experienced two doctors who claimed that the lump in
her breast was not a tumour. However, ‘there was something in the back of my head
telling me to not give up on this’. She called the hospital several times, and finally she
received the breast cancer diagnosis. The period from mammography to surgery was
79 days, and she said:
‘I had to fight to get there, and it is bloody disappointing (…) if they had taken me
seriously back then, it probably wouldn’t have hit me this hard now’ («B»).
The feeling of not being taken seriously could lead to an overall negative experience
of interaction with HCP. For instance, one woman characterized the meeting with the
health-care system as negative, seemingly because she felt she was not taken seriously
in the initial phase of the disease trajectory:
‘I went to see my GP and found the lump … or I found the lump myself. But she [the
GP] said this does not look like a typical cancer tumour. She still referred me to
hospital. And I had a mammography and ultrasound and no … it was nothing, so they
sent me home … and I had to live with the lump. My grandmother died of breast
cancer, and my aunt got breast cancer last year. This is not normal’ («C»).
Some patients also felt they were not being taken seriously during treatment, as
exemplified by one woman who was not informed that she was about to receive
Herceptin (adjuvant treatment, given after surgery): ‘Perhaps one physician thought
the other one had told me (…). No one told me that I needed subsequent treatment,
and this was a slip-up. I felt that this affected me’ («D»). She believed that unclear
information routines caused this lack of information about Herceptin, but eventually
she met an oncologist who took her seriously and told her about Herceptin, making
her feel safe again.
10
3.2 Evolving information needs across stages of treatment
The informants reported that in the early phases of the disease trajectory it could be
challenging to receive too much information too soon, but also to have to wait too
long to get the information. For some of the patients, the period from diagnosis to
surgery was short, but mostly evaluated as very positive. During this short period, the
women presented with a breast cancer diagnosis underwent surgery and received
information about adjuvant chemotherapy and radiotherapy. Being very vulnerable at
this stage, patients like those quoted below felt overloaded with information and
unable to process it:
‘When I had surgery, when my breast was removed, a nurse waited for me outside
my door. She had to talk to me. No, I don’t want to talk to anyone. Yes, you have to
take all these brochures so you know what to do. Then I felt, no, I don’t want the
brochures (…). But I was polite, and took them, brought them back home and threw
them in a drawer. It was a bit too much information (…) I had to process the situation
first, because, the period from the diagnosis to the completed surgery was too short’
(«E»).
On the other hand, if information was provided later than the patient had expected,
it was regarded as extremely negative, as waiting time most often led to insecurity and
frustration: ‘My cancer results came through in November, but I didn’t receive the
message until Christmas. I think this was unfortunate, because we phoned and phoned
and there was no one there that could give me an answer’ («F»).
Throughout the entire disease trajectory, there was a clear preference for
unambiguous and accurate information, about the diagnosis, treatment plan, side
effects (acute and late effects), follow-up and rehabilitation. The women’s stories
reflected both active and passive ways of meeting information needs. Their active
approach included asking questions. ‘I’m satisfied [with the information]. I was made
aware of what I wanted to know, and I was not afraid to ask’ («G»). However, some
of the women were not satisfied with the fact that they had to ask to get information:
‘I had to contact him [the GP] myself if I wanted anything. They took some tests, but I
never got the results before I called them and asked. I’m used to it now, but I’m not
always cheerful when I visit the GP’ («H»). Quite a few met their information needs
passively, meaning they waited for someone to inform them instead of seeking the
information themselves. These patients did not like to ask questions, and they did as
they were told: ‘I didn’t ask. I didn’t nag. I just suddenly received a letter’ («I»), and
‘I don’t understand, and I don’t ask. I do what I’m told to do’ («J»).
For some patients, the passive stance towards information needs resulted in
surprises regarding treatment and/or follow-up procedures, as illustrated in the
following quote from a patient who was unaware that she was going to have
chemotherapy and radiotherapy: ‘I thought the treatment was done when I had
surgery, because no one mentioned anything else’ («H»). Another patient got an
infection that led to hospitalization during chemotherapy because no one had told her
she could get a sick note during this therapy phase: ‘There was a doctor, who wagged
his finger at me (saying): “Are you aware of how sick you are, woman?” Yes, I know
that I am sick, I said, I am aware of that. “But why, in heaven’s name, didn’t you stay
home from work?” No one told me to stay home, I said’ («K»).
11
The patients preferred to receive information from the HCP verbally. Ideally, this
would be the oncologist, and the same one each time, as meeting different physicians
telling different things could make the patients insecure, as illustrated in the following
quote:
‘And I had a lot of expectations when I arrived (at the hospital). I had so many
questions, and I wanted to ask about so many things that I had gradually discovered.
And I didn’t know whom to ask or who could give me the answers, because (…) I
didn’t meet one permanent physician at the hospital, there were so many saying
different things’ («D»).
At the end of the treatment when the patients realized they might never meet the
oncologist again, they felt alone and left to their own devices. Regular and prolonged
interaction with the oncologist was a pronounced wish as it would make them feel
safe and be helpful when new questions emerged after the treatment period was over.
One of the participants described it like this: ‘You shouldn’t be kicked out of the
cancer department on the last day of your treatment. There should have been someone
to talk to [at the hospital], some peers (…) and a consultation with an oncologist a
year afterwards, because I had so many questions, and I still have’ («L»).
In general, the GP had the responsibility for follow-up care after cancer treatment.
However, in our study, participants rarely referred to the GP as the contact person
they needed or preferred. The women experienced that the GP lacked knowledge
about cancer survivorship follow-up care. Some of them said that they had to tell the
GP what to do, as in the following quotes: ‘I have to ask (the GP) about everything:
Shouldn’t I have an appointment for follow-up care? Shouldn’t I be referred?’ («H»).
And: ‘But she (the GP) didn’t even know what Herceptin was, she didn’t know
anything about cancer treatment (…) I got the impression that she hadn’t even been
informed about what tests she was supposed to perform’ («D»). This participant did
not have confidence in the expertise of the doctor, which influenced her total
experience of the post-treatment period.
3.3 Finding the right network
As mentioned before, the different types of breast cancer treatments and the
combination thereof can cause several complications such as nausea, loss of appetite
and fatigue in addition to emotional stress and anxiety [26]. The interviews reflected
that for many women, the illness itself, the treatment and the related complications
imposed great changes in their lives. Hospital care also incorporated support to the
individual affected. From the accounts, we observed that HCP organized different
group activities including physical activities, and discussion of practical information,
such as strategies of how to cope with different side effects (Table 3). Most of the
women communicated appreciation with these support group activities:
‘I joined a group, with other women with a breast cancer diagnosis, and I think
that was good, because we met a physician, a physiotherapist and an occupational
therapist, and we could ask questions, this was after the surgery’ («M»).
12
However, in the time after hospital discharge, some women took a different view
on participating in support groups. While some emphasized the support and activities
offered by formal support groups, like the specialized rehabilitation programme and
the non-profit breast cancer society, others were not that eager to seek contact with
other cancer patients. Moreover, the latter wanted distance from the disease itself,
including organized social contact with other women in the same situation:
‘It was ok to talk to someone who has had it (breast cancer) themselves and who
knows what they are talking about, but I don’t want to take part in a breast cancer
group or things like that. I sort of pretend that I have recovered’ («N»).
Instead, they built a network of various informal groups (Table 3). Some women
focused on their social network with family members, one or several ‘old friends’, or
new friend(s) whom they had met occasionally, for instance through social media or
physical activity. Examples from the accounts illustrate that these new friends might
have experienced a serious illness themselves – ‘Because, I thought that when I had
fought for five years I was safe. So, those who experience this for the first time, they
get terrified [in group discussions]. I have to contact girlfriends who feel the same’
(«B») – or were able to advise our informants on medication: for instance, on
alternative medicine that could possibly benefit their breast cancer condition.
Table 3: Types of hospital and post-hospital communication networks
Formal/informal Network types Purpose
Group care organized Physical activity, information
Formal and led by hospital staff
Formal Support groups Social: bringing together patients
facing similar challenges
Formal Rehabilitation groups The way back to normal life:
physical activity, nutrition,
individual counselling, support
Informal Family Social/ physical activities
Informal Friends Social/ physical activities,
advice on medication
Informal ‘Similar patient group’ Social/ physical activities,
advice on medication
4 Discussion
In this paper, we used data from a sub-study within a follow-up programme of
patients treated for breast cancer to investigate patients’ experiences regarding the
information from and communication with health professionals across various stages
of their cancer trajectory from a long-term perspective.
13
Even though the participants expressed a high level of satisfaction with care, they
also highlighted communication-related issues that they experienced as problematic –
or challenging – during their treatment trajectory. They particularly linked these
issues to delays in initial referral to the breast cancer facility, information needs that
varied throughout the trajectory, and differences in how they met their information
needs during hospital care as well as after hospital discharge. The information needs
identified in this study include several other aspects besides the content of
information, which has been the focus of attention in the majority of previous studies
of information needs (for example in [30-32]). In addition to what the participants
needed to be told, this analysis revealed needs concerning how the information was
given, when and by whom. All these aspects are of relevance for preparing the best
conditions for well-informed, satisfied patients who are truly able to participate in
shared decision-making.
In line with previous work, we found that women who presented with symptoms at
their GP, experienced diagnostic delays which made them feel that they were not
being taken seriously [33-35]. Regarding how the information was given, it is
important to have a health service in place that takes patients seriously to avoid
making them feel insecure, which can lead to the risk of creating distrust in the HCP
[36]. As such, health policies expect that the recent introduction of standardized
cancer care pathways (CCP) in Norway will ensure more timely diagnosis and
treatment as well as creating greater predictability for the patients [37]. CCPs are
supposed to ensure patient participation and the provision of adequate information and
communication, i.e. ensuring standardized and adjusted instructions for when the
provision of information should take place, and by whom. However, the Norwegian
CCPs first started in 2015 and it is too early to evaluate their effects on GP-related
delays.
Cancer patients’ information needs in later stages of the hospital therapy period
obviously deserve more attention. One major reason, as identified by our study
findings and other work [38], is that the cancer patients’ information and
communication needs evolve throughout the treatment trajectory: the longer the
trajectory, the more questions the patients have. In addition, HCP should take into
consideration that even if some patients meet their information needs actively, others
might take a more passive stance. This is important because well-informed patients
are pivotal for participating in shared decision-making about treatment [39] as well as
for ensuring compliance to post-hospital treatment [40]. Policies should consider the
possibility of standardizing procedures for long-term interaction with HCP in care
pathways, for instance through the upgrading of GP skills or arranging for HCP to
participate as experts in support groups.
Our findings also indicate that HCP should be more aware of issues related to the
small facets of the different treatment options when communicating with patients, as
some women reported a lack of detailed and accurate information about what to
expect from different types of breast cancer therapies. For instance, more clear
communication about subjects like the forthcoming treatment options after surgery or
about anti-hormonal therapy use and variations. Of note, recent work by Mullaney et
al. reports similar findings [41]. This study investigated cancer patients’ interactions
with medical technology in treatment situations, showing that lack of adequate
preparatory information can affect patient’s emotional experiences negatively, for
14
example creating anxiety [41]. Further to this, patients’ confidence in the expertise of
the HCP is crucial for their experience and trust in the health service, but also for their
perception of receiving good care. Today, the CCP guidelines include directions about
providing information to – and having dialogue with – patients about treatment
options and outcome. However, one might speculate to what degree the individual
cancer patient is aware of these specific patient recommendations.
While helpful for some patients, participating in a post-hospital, specialized breast
cancer rehabilitation group did not suit everyone. In our study, several women
expressed that they wanted to forget their cancer disease and treatment after hospital
discharge. Neither did they feel the need for seeking information or advice from other
formal breast cancer networks like the non-profit cancer societies. A few women
developed relationships with people they met by coincidence, e.g. through friends or
social media, and took the opportunity to seek information on alternative medicine or
about their long-term anti-hormonal therapy. However, those who participated in
rehabilitation groups expressed satisfaction with the overall programme and activities.
This finding indicates that there might be a need for further investigation into which
patients benefit most from participating in a specialized rehabilitation group. This
includes preparing and disseminating sufficient information of high quality to all
patients about rehabilitation services and group education to ensure that the choice
they make about joining or not is well informed. Updated, quality-ensured
information about breast cancer is available through different web portals (such as the
Norwegian Directorate of Health, the Norwegian Cancer Society and the Breast
Cancer Society). Specific information about rehabilitation services and group
education should be included in these.
It is a specified aim in Norwegian political guidelines to develop shared decision-
making tools and to make these tools available on Helsenorge.no [42], which is the
Health and Care Services’ portal for health information and self-service solutions for
the population. Welfare technology, telemedicine, video communication and eHealth
promote new ways of involving and treating patients. However, seeking health
information can be a complicated process [43]. As shown in the present study, some
patients prefer to wait for someone to give them information instead of actively
seeking the information they require. This represents a challenge in enabling patients
to be actively involved in decisions. Moreover, face-to-face interaction is still the
preferred method for receiving information for many patients, not least due to its
crucial importance for establishing and maintaining a trustful relationship [44].
Limitations of this Study
This study has some limitations. First, the retrospective nature of the data may be
associated with recall bias because the participants had to talk about experiences that
took place 7–8 years before the collection of interview data. On the other hand,
through their rich accounts, the women give detailed descriptions of specific events,
which increase the reliability of our findings. Examples here include, but are not
limited to, the date of receiving their cancer diagnosis, the date of hospitalization, the
encounters with their oncologist as well as what he/she said during a specific
consultation. The retrospective nature of the data could also affect the patients’
answers in the interviews, as previous studies have shown that patients tend to be
15
more critical when evaluating their experiences a longer time after the actual event
[45-47]. Second, the design is limited to one breast cancer facility in Norway, and the
findings may not be applicable to other facilities and other countries. Third, the
context of cancer care has changed after the treatment of our study participants 7–8
years ago. Breast cancer treatment is a dynamic process and has changed a lot over
the years: some patients need chemotherapy, but the oncologists do not know whether
it will be required until three weeks after surgery. Similarly, the specifics of endocrine
therapy vary with patient age (pre-/post-menopausal). In addition, Herceptin was first
introduced for treatment in 2006/2007 and obviously, there was less experience with
this therapy in 2007. As previously mentioned, the implementation of cancer care
pathways (CCPs) occurred in 2015, and as such it is too early to evaluate its impact on
patient experiences. Patient-reported experiences should be valuable for future
evaluations of information and communication within CCPs.
5 Conclusion
This retrospective analysis of breast cancer patients’ experiences of information and
communication during the breast cancer trajectory showed that the majority of the
participants were satisfied with their interaction with health-care personnel. However,
in our study, the women addressed information needs’ challenges throughout the
treatment trajectory and the after-care stage, and we do not know whether current
breast cancer patients still face these challenges or not. Moreover, our study shows
that time-relevant information and consolation in vulnerable phases may be as
important as sufficient information. As such, the presented findings can be useful for
developing and improving patient information within the public area and the different
breast cancer practices.
Acknowledgments Thank you to the patients and the staff who participated in this
study. Thank you to Andreas Landmark for assistance with the proofreading.
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