ABSTRACT
Background
Pancreatic cancer is often diagnosed in late stages of the disease with only a 10% 5‐year survival. The disease is associated with complex symptoms and psychological distress.
Aims
The specific objective of this qualitative study was to explore patients' experiences of what symptoms and distress that had impact on their everyday life.
Methods
We interviewed 31 patients with advanced pancreatic cancer nested within a randomized controlled study, called MISTRAL, about their everyday life using a semi structured interview guide. For data analysis we used interpretive description as described by S. Thorne to capture the subjective experiences of a population with the intention of improving clinical practice.
Results
Three themes were identified from the interviews: “Unpredictability”, “Psychological and social distress” and “Strategies for hope and normalization”. Unpredictable and highly fluctuating levels of energy as well as psychological and social distress were reported as major concerns. Participants tried to normalize everyday life to maintain hope and cope with the situation.
Conclusions
Unpredictable and highly fluctuating levels of energy and major psychological and social distress impact on patients' ability to cope with symptoms and treatment. Patient‐centered care with interventions to reduce distress is important to improve quality of life among patients with advanced pancreatic cancer.
Keywords: activities in daily living, pancreas cancer, psycho‐oncology, psychological distress, quality of life
1. Background
Pancreatic cancer is known to have a poor prognosis, is often diagnosed at a late stage and is the seventh leading cause of cancer death worldwide [1]. The incidence is 7.7 diagnoses per 100,000 individuals per year in Europe [2] and most patients are over 70 years at diagnosis. The median survival is less than 5 months and only 10% of the patients survive more than 5 years [2]. Patients with pancreatic cancer often face a rapid transition from early to late palliative phase experiencing a variety of severe symptoms resulting in decreased quality of life (QoL). Physical symptoms like digestive problems, pain, fatigue [3, 4] diabetes and thromboembolism [5] as well as psychological distress such as impaired sense of well‐being, depression, and anxiety, are common [4]. Advanced pancreatic cancer (APC) is particularly associated with a high symptom burden and poor prognosis.
Distress in the context of cancer has been defined by the National Comprehensive Cancer Network as a multifactorial unpleasant emotional experience. It may be of psychological (cognitive, behavioral, emotional), social, and/or spiritual nature and interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Patients with cancer report major concerns related to reduced cognitive and emotional function [4]. Distress is more frequently reported by patients with pancreatic cancer [6] than by those with other cancers.
The occurrence of multivariable physical symptoms among patients with APC often results in psychological distress with secondary depression and anxiety frequently observed [7, 8]. Still, research about the lived experience of psychological distress among this group of patients is largely unexplored.
Prior research is largely based on quantitative tools to assess physical symptoms like fatigue and pain [9, 10], often overlooking the subjective and changing nature of symptom distress.
This qualitative study aims to further bridge the critical gap between theory and clinical practice by exploring how patients with APC perceive and experience their symptoms in the context of daily life.
2. Methods
2.1. Context and Design
This is a cross‐sectional qualitative study with semi structured face‐to‐face interviews, nested within a Swedish, multi‐center, double‐blind, randomized, placebo‐controlled trial [11] MISTRAL investigated the efficacy of mistletoe extract as a complement to standard treatment in patients with advanced exocrine pancreatic cancer (n = 290) and Eastern Cooperative Oncology Group (ECOG) performance status 0–2.
We aimed for a heterogenous study population regarding age, gender, place of residence (urban/rural), treatment (palliative chemotherapy with palliative care/best supportive care (BSC) only) and trial arm (mistletoe/placebo). At study‐start, we planned to include 30 patients to cover 10% of the patients in the main trial MISTRAL and above‐mentioned variables and to make sure we would reach meaning saturation, which usually occur after 9–17 participants in qualitative interview studies [12]. The data manager, being the only unblinded staff member with no contact with participants, suggested potential participants consecutively out of those who initially, at inclusion of the main trial, had consented to participate in an interview 2–3 months after randomization, to ensure a heterogenous sample. At the time of the interviews and the analysis of the results, neither the interviewers nor the participants were aware of whether the participants were receiving the study drug mistletoe (ME) or placebo. After the code was broken, we rechecked the interviews and saw no pattern in the answers from participants in the ME and the placebo‐arm, respectively. The interviews took place within 2–3 months after inclusion in the main study. Our study design is inspired by the methodology of interpretive description (ID) as described by S. Thorne [13]. ID is a qualitative research approach aiming to move beyond theory into practice, that is to capture the subjective experiences of a population with the intention of improving clinical practice. Furthermore, with semi‐structured interviews and analyses based on the approach of ID we aimed to explore how patients describe their daily routines, challenges, coping strategies, and emotional responses in their own words, which standardized questionnaires on symptom and quality of life, like the EORTC QLQ‐C30 used in the main trial MISTRAL, cannot fully capture.
2.2. Ethics
For this qualitative study, all participants received both written and oral information at the 2‐month follow‐up visit in the MISTRAL randomized controlled study [14]. Patients signed an informed consent before the interview was conducted. The study was approved by the Swedish Regional Ethics Board, Stockholm, Sweden, Dnr. 2016/122‐31/2.
2.3. Data Collection
In total, 36 patients were asked consecutively resulting in 31 study participants. Five patients declined participation (too tired/too troubled/considered ending participation in the main study). Demographics of the present study population is displayed in Table 1.
TABLE 1.
Demographics of the 31 participants with non‐operable pancreatic cancer, ECOG ≤ 2 and a life expectancy ≥ 4 weeks.
| Name | Age a | Sex (M/F) | Concomitant CT | Living area | Site of interview | Days b (months) | Interview (minutes) | Interview (D/F) | Survival (months c ) |
|---|---|---|---|---|---|---|---|---|---|
| Agnes | 82 | F | No | Urban | Home | 85 (2.8) | 59 | F | 2.4 |
| Anders | 72 | M | Yes | Urban | Home | 78 (2.6) | 66 | F | 2.2 |
| Brian | 78 | M | Yes | Urban | Home | 71 (2.3) | 69 | F | 2.6 |
| Beryl | 51 | F | Yes | Urban | Home | 84 (2.8) | 39 | F | 2.5 |
| Eric | 84 | M | No | Urban | Home | 95 (3.1) | 54 | F | 1.0 |
| Fredrik | 88 | M | No | Urban | Home | 86 (2.8) | 33 | F | 2.9 |
| David | 54 | M | Yes | Urban | Home | 87 (2.9) | 58 | F | 46.7 |
| Georg | 56 | M | Yes | Urban | Workplace | 72 (2.3) | 63 | F | 19.8 |
| Dolly | 59 | F | Yes | Urban | Home | 83 (2.7) | 59 | F | 3.0 |
| Erica | 84 | F | No | Urban | Home | 91 (3.0) | 75 | F | 4.8 |
| Frida | 62 | F | Yes | Urban | Home | 70 (2.3) | 86 | F | 10.0 |
| John | 56 | M | Yes | Urban | Home | 77 (2.5) | 32 | D | 2.0 |
| Grace | 71 | F | Yes | Urban | Home | 85 (2.8) | 41 | D | 20.3 |
| Harriet | 74 | F | Yes | Urban | Home | 73 (2.4) | 43 | D | 12.6 |
| Ivan | 73 | M | Yes | Rural | Home | 73 (2.4) | 67 | F | 0.5 |
| Michae | 67 | M | Yes | Rural | Home | 67 (2.2) | 39 | F | 11.5 |
| Monica | 73 | F | Yes | Rural | Home | 73 (2.4) | 41 | F | 13.0 |
| Ingrid | 76 | F | Yes | Rural | Home | 76 (2.5) | 37 | F | 2.6 |
| Nicolas | 56 | M | Yes | Rural | Home | 56 (1.8) | 61 | F | 29.7 |
| Oscar | 69 | M | Yes | Rural | Home | 69 (2.3) | 80 | F | 3.9 |
| Nelly | 76 | F | Yes | Rural | Home | 76 (2.5) | 51 | F | 14.9 |
| Per | 75 | M | Yes | Rural | Clinic | 75 (2.5) | 28 | F | 23.0 |
| Richard | 58 | M | Yes | Urban | Clinic | 95 (3.1) | 55 | F | 2.1 |
| Olivia | 47 | F | Yes | Urban | Home | 94 (3.1) | 50 | F | 7.3 |
| Paula | 67 | F | Yes | Urban | Clinic | 73 (2.4) | 53 | F | 5.8 |
| Rose | 73 | F | Yes | Urban | Home | 98 (3.2) | 35 | F | 1.9 |
| Sandra | 46 | F | Yes | Urban | Home | 74 (2.4) | 62 | F | 24.0 |
| Tilde | 68 | F | Yes | Rural | Clinic | 93 (3.1) | 71 | F | 5.3 |
| Steven | 67 | M | Yes | Rural | Clinic | 89 (2.9) | 32 | F | 6.0 |
| Tony | 47 | M | Yes | Rural | Home | 87 (2.9) | 38 | D | 2.3 |
| Ulrich | 65 | M | Yes | Rural | Home | 97 (3.2) | 37 | D | 4.3 |
| Mean | 67 | 81 (2.7) | 54 | 9.4 |
Age at interview; CT = chemotherapy; F = female; M = man.
From inclusion to time of interview; D = digital, F = face to face.
Survival = time from interview to death or last follow‐up January 2023 in the MISTRAL study.
All participants chose the place for the interview resulting in 25 interviews at the participant's home, five at the hospital, and one at work. Five participants were interviewed by phone or by video communication due to restrictions during the COVID‐19 pandemic (2020–2021). Some relatives were at home during the interviews, sometimes sitting beside the participant. The relatives sometimes intervened to emphasize, and confirm facts about timing, or, more rarely, to remind the participant.
We based the topics in our interview guide, Supplement 1, on prior publications on mistletoe treatment and palliative care. We asked open questions about the patients' last 3 months, physical and psychological well‐being. We aimed to collect information about what troubled them both physically and mentally including eventual physical symptoms, emotions, existential and or spiritual thoughts. We made sure to cover the topics appetite, body temperature, energy levels, sleep and tiredness, symptoms previously mentioned in relation to mistletoe treatment [15].
All interviews were audio recorded and transcribed verbatim by a professional transcriber. The interviews lasted in mean 54 min (range 28–86). Field notes written by the interviewers were used to record nuances not conveyed verbally.
2.4. Data Analysis
The transcribed interviews were checked and corrected by the interviewer and then uploaded to the qualitative software package NVivo 11 Pro. Inductive coding started during data collection for adjustment of the interview guide, Supplement 1. The first five interviews were used to develop a coding scheme; related codes were grouped together into preliminary themes. The coding scheme was further expanded throughout the remaining coding; for example, questions about support were made more explicit in later interviews. After the initial inductive approach, thematic analyses were used, and key phrases highlighted and coded into 18 themes representing similar ideas and text. One phrase could be coded into more than one theme. To meet the study's aim a second inductive analysis of the text in the coded themes of “daily life”, “relatives and friends”, “death” and “psychological issues” was made. In data presentation below, quotations from participants have been selected for illustration. False starts, repeated phrases, and irrelevant information have been omitted from quotes as indicated by/…/. An ellipsis … designates a pause. All names are pseudonyms chosen by the research team.
3. Results
3.1. Study Population
This qualitative ancillary interview study included 31 participants from the MISTRAL trial with 290 patients in total [14]. Recruitment took place across four oncological centers in both urban (12 participants) and rural (19 participants) locations in Sweden. In addition to the study drug (15 mistletoe or 16 placebo), 27 of the 31 participants had received concomitant chemotherapy, while 4 got BSC only. The 16 men and 15 women were interviewed at a mean of 2.8 months from inclusion in the main study. They were 46–88 years old and had inoperable locally advanced or metastatic pancreatic cancer or a relapse of pancreatic cancer.
3.2. Themes
We identified three themes during analyses of the interviews: “Unpredictability”, “Psychological and social distress” and “Strategies for hope and normalization” (see Table 2).
TABLE 2.
Themes and sub‐themes from the data analysis of the 31 interviews with patients with non‐operable pancreatic cancer.
| Themes | Sub‐themes |
|---|---|
| Unpredictability | Energy levels |
| Pain | |
| Psychological and social distress | Distressing symptoms |
| Distress in relation to others | |
| Strategies for hope and normalization | Adjustments |
| Setting goals | |
| Hope | |
| Positive attitude | |
| Support | |
| Creating distance to the illness |
Participants described these three themes as part of a feedback loop, where the unpredictability of symptoms intensified psychological and social distress and vice versa, which in turn shaped coping strategies aimed at preserving hope and maintaining a sense of normalcy in daily life.
3.3. Unpredictability in Daily Life
The participants expressed how unpredictable daily life had become since their diagnosis of pancreatic cancer. They never knew if they would wake up with symptoms affecting their energy levels (sub‐theme), and if so, to what extent the symptoms would restrain them from participating in activities or leaving home. Pain, another sub‐theme also had impact on their daily activity. Many experienced that their energy level and ability to engage in work and social activities changed a lot from day to day and sometimes even within a day. In addition, their daily life was interrupted by treatments, blood tests, x‐rays and meetings with different caregivers, necessitating frequent changes of plans. Many of the participants who received palliative chemotherapy described how their physical and mental strength varied along with the rhythm of treatments.
3.3.1. Energy
All participants commented on their energy levels and how tired they were—or were not. The code “Energy” includes everything that had to do with a general feeling of tiredness (fatigue) related to their ability to be active during the day.
Some participants expressed feeling stressed over trying to grasp moments of energy, which could soon pass. The fluctuating level of energy was hard to predict and participants like David and Olivia shared stories of how they both under‐ and overestimated their energy. David said:
I play golf sometimes /…/ one day when I’d felt tired I asked myself, hm how will this end? But while I was playing I didn’t think about it. That was good, because then I realized that sometimes … I’m not as weak as I think I am. That is, physically, I’m not as weak as I feel mentally /…/ Sometimes I feel more tired before I get myself going and do stuff. That’s pretty good as a … I realize that sometimes it [the fatigue] is more in my head, than actually in my body. And then if I do something fun, everything will work out okay.
Olivia described the opposite, overestimation of her energy resources:
… I still need help restraining myself, because I tend to think ‘That’s great fun and gives me lots of energy [a lunch meeting at work],’ but it consumes lots of energy, too /…/ I get “good” hormones, but on my way to pick up my little boy I may suddenly feel dead tired, which makes me question my priorities.
The majority of participants related that they could suddenly become exhausted, which made it hard to plan their day. Dolly said:
I can never plan anything, because I never know how I will feel /…/ I don’t dare to go out /…/ if I’m out somewhere exhaustion can strike and then I need to lay down right away.
However, a few described how they had continued with all their activities, surprising both themselves and their friends and family. For example, Nicolas said:
I’m not particularly tired, nothing like that. I almost never take naps during the day.
3.3.2. Pain
Unpredictable pain was another symptom often described as affecting daily life. Tony said:
Sometimes I’m in so much pain I can’t stand it. And also, I get so tired because I haven’t been able to walk or get around /…/ I don’t have the strength. If I manage 200 m I’m dead tired.
For some, pain medications had a negative impact, as described by Beryl:
I had a lot of pain and got painkillers that changed my personality. I couldn’t eat, I couldn’t stay still. Ugh, I felt awful. I was a zombie.
3.4. Psychological and Social Distress
This theme consists of reports of psychological and social distress described by participants as related to two main areas: “distressing symptoms” and “distress in relation to others”. The sub‐theme “distressing symptoms” contain stories of both physical and cognitive symptoms. Many mentioned sadness, anxiety, anger, and even guilt when they failed to go through with previously planned activities with others. In addition to their own disappointment, participants felt they were failing family and friends when unable to participate according to plans, described in the sub‐theme “distress in relation to others”.
3.4.1. Distressing Symptoms
Psychological and social distress was caused by both physical and cognitive symptoms, especially during interactions with other people. Disabling symptoms from the gastrointestinal tract with impact on social relations are illustrated by Frida:
Well, some days it might happen … you know, that you feel so bloated, and it smells so bad. That’s a social dilemma. It sounds silly, but then I try to avoid being out among people, if possible… /.
Sometimes participants were unaware of their own psychological distress and bad mood until it was pointed out by others. For example, Dolly expressed that she did not understand why she felt so bad until her daughter told her she had had an anxiety attack:
I had never had anxiety, I didn’t even know what it was. /…/. It was … yesterday I realized it was anxiety I was feeling /…/I had just felt very, very bad.
3.4.2. Distress in Relation to Others
Participants talked about how hard it was for them to see family and friends sad and worried. Moments together with others brought distress, with feelings of guilt for disappointing people around them. Beryl expressed anger this way:
I understand it’s hard on my family, that’s just how it is … cancer is goddam fucking shit, is what it is. /…/ You disappoint your family (voice trembling) in some way.
Some participants were afraid of being a burden to their family and friends, exemplified by Rose's statement:
You don’t have the endurance to play with them [grandchildren] that much, but it’s fun to watch them. /…/ You can’t fall apart and get depressed and … sort of become a burden to them, can you? You have to try and enjoy the positive moments.
Fredrik said “I feel best when I'm alone”, indicating that he is isolating himself from others.
On the other hand, some participants feared being forgotten and alone. They wanted to be part of life and daily activities. Grace told us:
That someone stays in touch is important. To feel you haven’t been forgotten, because otherwise it’s easy to think “nobody cares about me” … Yeah, you’re on your own, all alone.
3.5. Strategies for Hope and Normalization
The participants described how they strived for normality and meaning. Some described how they used coping strategies and/or spiritual resources for example hope and positive thinking to find meaning. Other strategies described as helpful in dealing with unpredictability were to adjust daily routines, set goals, look for support, and distract or distance themselves.
3.5.1. Adjustments
Many participants tried to adjust their daily schedule according to the treatment regimens and new rhythm of life to make life more predictable. Rose said:
You arrange life around it [the chemotherapy]. An abnormal life sort of becomes a normal life, y’know, after a while. You get used to it.
Many tried to help their friends and relatives adjust and feel at ease with the situation. Some viewed pancreatic cancer as a stigma and wanted to nuance the thoughts associated with the diagnosis, as illustrated by Frida:
A lot of my friends and contacts say, “Gee it’s nice to see you, and you’re about the same as usual.” /…/But I understand they had to meet me to see that, because I know what they thought when they heard about this [the diagnosis], this disease is a stigma.
3.5.2. Setting Goals
To manage psychological distress from being unable to sustain daily routines, some set goals in the future to have something to look forward to, to keep their hope alive and get them through the day. Brian said:
You should always have some kind of goal. Something to look forward to and reach for.
They tried to enjoy every second of life and changed their goals over and over again to normalize everyday life. For example, a goal of taking long daily walks changed over time until the goal for a day could be to manage a few steps “between one park bench and another” as Anders said.
3.5.3. Hope
All the participants knew they had an aggressive cancer that would end their lives early and that their chances of long‐term survival were slim. Most of them still expressed hope for a long and normal life.
Ulrich expressed hope of being able to bowl with his friends again: “At present I don't have the strength to go bowling/…/, so I have to wait with that for a while. I'll start again in the fall. Hopefully I can do that at least./…/I've lost 25 kg so some muscles are gone, but I hope to recover when everything has settled down. It should be possible, I think.”
Many participants tried to maintain some of the structure of their earlier everyday life. However, some participants said that when they accepted to be out of control of their daily life they felt hope, suddenly relieved and free, Anders said:
It makes me feel a sense of freedom. To expect and accept the worst, prepare for the worst..it makes me see a light at the end of the tunnel. /…/ I feel free as if I’m floating down a river, like a leaf, not being able to change what happens next. Suddenly you’re sucked down in a vortex, and that’s the days I feel bad /…/ and then suddenly, you’re at the surface again, floating along and everything is calm and quiet.
3.5.4. Positive Attitude
Many of the participants expressed how important they thought it was to try to think positively and not dwell on things they could not change. Frida said:
One thing I have done, which I’ve been very particular about, a strategy, is not to dwell on the injustice in all this. That’s just a blind alley.
When they got sad many described how they tried to tell themselves that things would work out well. Olivia said:
Of course, I sometimes get a bit … overwhelmed. Triggered by something I watched or heard on TV, but I still think that I … I believe that if you decide to get better, stronger, it will improve your overall situation.
3.5.5. Support
Many turned to family, friends, colleagues, counselors, health care staff and different support groups for support and comfort. Participants said they got energy from family and friends. Some described how they would not have managed without their closest family, as illustrated by Dolly:
My husband used the possibility to stay at home with social insurance to take care of me /…/ I don’t know how I would manage without him.
However, those who turned to others for support nonetheless often described themselves as alone, having to fight for themselves. Harriet said:
I have, um, support. I have, … my children supporting me, three grown‐up children. But they support in their own way…. Then there’s my sister who lives relatively nearby and she’s also supportive. And I have friends but I don’t talk much about disease with them. I haven’t told them very much … I run this race by my own.
Many said they were grateful to have specialized palliative home care to help them and made them feel safe, as Beryl described:
/…/ it’s a sense of security having them [home carers] actually. Real security. /…/ I want to be at home.
3.5.6. Creating Distance to the Illness
To cope, some participants created a distance between themselves and the illness. Many answered a question about psychological well‐being with descriptions of physical symptoms. They said they had not thought much about how they felt about the whole situation.
Richard reflected on life saying: “Life isn't entirely unpleasant, I can't say that. It's just that you have to … get lucky, that's a fact. Very lucky.”
Some said they actively distanced themselves from the disease and thoughts about their prognosis, like John, who expressed:
I will not go deep down because that is not endurable. Then it’s like …You have to do things.
They tried to rest from thoughts about cancer and the future when they could to save strength. Like Ingrid said: “One day at a time. Of course it's sad, it's terribly sad, but it won't get any better because I ponder about it.”
4. Discussion
This interview study focused on how patients experienced daily life with APC as well as the consequences associated with those experiences. Our main finding is that the unpredictability of symptoms in everyday life generates psychological and social distress.
Participants described experiencing symptoms of the disease and treatment such as fatigue, pain and side effects. Importantly, however, the unpredictable and highly fluctuating level of energy was described by the majority of participants as the major concern, often impairing their ability to participate in social activities.
Unlike previous studies that primarily quantified symptom prevalence and severity, our findings reveal that it is not the presence of specific symptoms alone, but rather their unpredictable and fluctuating nature, that patients found most distressing. Participants described how the intertwined nature of physical and psychological symptoms—such as fatigue triggering anxiety, or pain exacerbating feelings of hopelessness—created a complex and often overwhelming experience. This contrasts with the more quantitative symptom reporting in Ibrahim et al. (2024) [9], who used standardized tools to assess symptoms as discrete entities in newly diagnosed patients, and Tang et al. (2018) [4, 10], who emphasized symptom intensity but noted the lack of qualitative insight into symptom quality and distress.
We recruited patients to this study within the MISTRAL trial, which randomized patients with advanced pancreatic cancer to mistletoe (ME) or placebo in addition to standard treatment. The MISTRAL trial reported no statistically significant benefit of adding ME to standard treatment with respect to either overall survival or global health as a measure of quality of life [14]. In addition, the proportion of patients receiving best supportive care only (20%) and palliative chemotherapy (80%) in the main trial is similar to the proportions in our qualitative study [14]. Therefore, patients' experiences expressed in our study can be generalized to patients with advanced pancreatic cancer.
There is little research specifically focusing on experiences of everyday life among patients with pancreatic cancer. One exception is Wong et al. [16] who explored psychological distress in patients with pancreatic cancer by using photography. Similar to the findings presented here, they found that unpredictability in daily life impacted relationships with family and friends and “changed roles and identity”.
While Taylor et al. (2021) [17] provided valuable qualitative data on psychological distress following pancreaticoduodenectomy, their focus was limited to resectable disease and post‐treatment recovery in patients having cause for hope to be cured. However, our study extends this understanding to patients with non‐resectable disease with short survival, highlighting how resilience, dignity, and hope are continually negotiated in the face of an uncertain and evolving illness trajectory. Moreover, unlike Taylor's cohort, which had completed treatment and reflected retrospectively, our participants described real‐time experiences of symptom unpredictability and its impact on daily life and identity.
In our study, psychological distress was a major finding, described in some way by the majority of participants. This contrasts with the review by Tang et al. [10], in which only 9 of 16 included studies of patients with pancreatic cancer reported psychological symptoms. The fact that all the studies included in the review used set questionaries, in contrast to our study based on semi guided interviews, likely explains this difference in the frequency of reported psychological symptoms.
However, our results on psychological distress are in line with Dengsoe and Janda [7, 8] discussing the high prevalence of psychological distress in APC and the importance to address the issue in clinical care.
Studies of interventions to treat psychological distress in patients with APC have shown promising results with reduced distress and improved emotional and social functioning. A qualitative study offered participants up to nine counseling sessions [18] and concluded that the intervention was feasible and highly acceptable, with perceived benefits. Another intervention study [19] involving two educational sessions, reported a trend toward improvement in the distress scale as well as in the physiological, social, emotional and functional scales for the intervention group.
The feeling of being a burden to one's family or disappointing family members was commonly expressed by patients in our study. Similar results have been presented by Gibson et al. [20] in their study of identity transition after pancreatic cancer diagnosis.
Another emotion our participants expressed was anger evoked by being unable to participate in social life the way they used to, and by the sadness their disease caused family members. In a slightly different way, Wong et al. reported from their qualitative study that patients expressed anger while searching for answers to the question of why they had got cancer [16].
There is an ongoing discussion in the literature about the linkage between pancreatic cancer, depression and survival. Several authors have tried to understand the higher proportion of depression among patients with pancreatic cancer, compared with other cancers, before and after diagnosis, but no consensus has emerged [21, 22, 23]. In our study it was uncommon that the participants mentioned feeling depressed when asked about their psychological well‐being.
Few participants commented about death, end of life or their existential needs. A possible explanation for this lack of existential discussions might be that we interviewed relatively close to the time of diagnosis and that cancer treatment was still ongoing for most participants, giving patients hope. Wong et al. [16] described that fears for the future started to be expressed when the patients were close to end of cancer treatment. Other explanations may be that discussions about end of life between health care staff and patients require a long‐term relationship, or that patients are more used to describing physical symptoms than emotional and spiritual well‐being. Another possibility is that the participants had existential discussions with health care staff within the normal care pathway, and not felt an urge to discuss them in these interviews.
Nonetheless, some participants did express thoughts about the consequences of their diagnosis, while also saying that they did not want to think about them yet. A few expressed what we interpret as existential loneliness, that they were in a situation they had to manage all by themselves and reacting with self‐isolation.
Strategies to deal with daily life were a common theme in our study and many mentioned believing that having a positive attitude could be helpful, which is in line with other studies [20].
4.1. Strengths and Limitations of the Study
One of the study's strengths is that the interviewed participants were a large and heterogeneous group. Another is that the questions asked gave participants a unique opportunity to describe everyday life, not only focusing on a specific topic.
One major limitation of the study is that those who declined participation in the MISTRAL study or the interview study may have perceived everyday life differently. In addition, partners were present during some of the interviews, which may have influenced the answers.
5. Conclusions
In conclusion, the majority of patients interviewed in this study experienced psychological and social distress as well as unpredictable and highly fluctuating levels of energy, impacting negatively on daily life. The nature of and complex interplay between these experiences impact on patients' ability to cope with symptoms and treatment; a clinical situation that clearly calls for patient‐centered care.
5.1. Clinical Implications
Altogether, our results underscore the need for care models that move beyond static symptom checklists and instead recognize the dynamic, relational, and context‐dependent nature of symptom experience in APC. In order to improve patients' QoL it is important to acknowledge daily distress and implement available interventions to reduce it.
Author Contributions
J.B., J.H.N., K.W., B.S. and B.‐M.B all participated in conceptualization, data curation, formal analysis, investigation, methodology, validation, visualization writing – original draft, writing – review and editing. Funding acquisition: K.W. Resources and software (Endnote) were financed by K.W. Project administration and supervision: B.‐M.B and K.W.P.F. took part in writing – review and editing the manuscript. B.‐M.B., B.S., J.B., J.H.N. and K.W. all participated in planning the study, construction of the semi‐structured interview guide, minor revisions of the interview guide during data collection, data analysis and writing of the manuscript. B.‐M.B., B.S., J.B. and J.H.N. conducted the interviews. The authors: B.‐M.B. (specialist nurse in oncology and PhD), B.S. (specialist nurse in oncology and PhD), J.B. (specialist in Oncology and Palliative medicine and associate professor), J.H.N. (pharmacist and PhD), K.W. (specialist in Oncology and Palliative medicine and PhD) and P.F. (research nurse and professor in nursing).
Conflicts of Interest
The authors declare no conflicts of interest.
Acknowledgments
The authors want to express their sincere gratitude to all patients participating in the study.
Bergqvist, Jenny , Nordberg Johanna H., Wode Kathrin, Sunde Berit, Fransson Per, and Bernhardson Britt‐Marie. 2025. “Living With Advanced Pancreatic Cancer: Patients' Experiences of Daily Life.” Psycho‐Oncology: e70260. 10.1002/pon.70260.
Funding: This study was financially supported by Ekhaga Foundation, Gyllenberg Foundation and The Sjöberg Foundation.
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