Summary of Study Characteristics
Details regarding the characteristics of included publications and their participants are provided in Appendix 2 and Appendix 3.
Study Design, Analytic Method and Data Collection
Nine of the 17 included publications did not report using any specific type of study design.7,9,12–18 Two reported using a qualitative descriptive design10,19, and two used a phenomenological design.20,21 One each described using phenomenographic,22 qualitative exploratory,8 participatory action research,23 or grounded theory24 design.
Seven of the 17 included publications described using thematic analysis7,12–14,17,18,23 to analyze their data. Three publications described using content analysis,8,10,19 two used Framework analysis.9,15. One each described using phenomenological analysis,21 grounded theory,24 phenomenographic analysis,22 thematic discourse analysis,16 and thematic content analysis.20
Thirteen publications representing 10 studies described using interviews to collect data.7–10,12–14,16,18,20–22,24 One publication each described their data as transcripts of in-office interactions between patients, caregivers and their health care providers,19 group discussion using photovoice,23 unstructured conversations,17 or a mixture of focus groups and interviews.15
Country of Origin
Of the 15 included studies, three were conducted in the USA,19,20,23 three studies reported on in four publications were conducted in the UK,7,9,13,14 two studies in Sweden,21,22 and one study was reported on in two publications was conducted in Denmark.8,10 One study was conducted in each of New Zealand,12 Canada,24 Australia,16 Germany,18 Ireland17 and the Netherlands.15
Study Population and Interventions
Eight studies reported on in nine publications described their participants as having pancreatic cancer.7,9,12,13,18,19,21,23,24 Three studies reported on in four publications included participants the majority of whom had pancreatic cancer and a portion of whom had another closely-related cancer (i.e., duodenum, bile duck, ampullary or colon).8,10,15,16 One study each included participants with chronic pancreatitis17 and acute pancreatitis.22 One study included participants with suspected pancreatic cancer14, and one study included people at high familial risk for pancreatic cancer.20
Two studies included patients who had undergone surgery for pancreatic cancer.16,21 One study reported on in two publications included patients with pancreatic cancer who had had surgery and were undergoing chemotherapy.8,10 One study included participants with pancreatic cancer who were on chemotherapy18 Two studies reported on in three publications included patients across the care pathway for pancreatic cancer.7,9,23 Two studies did not report the interventions participants were receiving for their pancreatic cancer.15,19 Two studies included patients undergoing PERT therapy for pancreatic cancer.12,13 One study included people who had been treated for pancreatic cancer and were under surveillance.24 One study included people with a high familial risk of pancreatic cancer who underwent surveillance.20 One study included participants undergoing diagnosis investigations for symptoms suggestive of pancreatic cancer.14 One study focused on living with chronic pancreatitis17 and another on recovering from acute pancreatitis22 and did not report the interventions participants were receiving.
Summary of Critical Appraisal
The credibility of the included studies was affected by rigour in data collection and/or analysis. These two interrelated issues influenced whether the reported findings were coherent and consistent with the collected data. For example, multiple studies collected data from people who had the experience in a long time frame (e.g., 1-5 years post-treatment) and analyzed those data as capturing the same phenomenon (e.g., recovery).15,17,24 This failed to account for the ways that people’s understandings and views of recovery from treatment change over time, and their description as static affected the credibility of those study findings. Similarly, studies where the description of the findings was superficial, not supported by data, or were judged to be not coherent with the study data and objectives were considered to be less credible.7,9,14–17,22,24
An additional issue affecting three studies was that caregivers or relatives participated in data collection and their perspectives were reported on although the consent process was not reported and the nature of their participation was not described in the methods section.14,15,24 This raised questions about the informed consent of those participants and how those data were collected, and influenced the judgement of lower credibility of those studies.
The final issue affecting the critical appraisal of the included studies was their transferability. Four studies were judged to have limited transferability. Two studies were of limited transferability because they focused on advanced pancreatic cancer.12,13 Additional studies had limited transferability because of a narrow focus on a specific treatment experience (e.g., recovery post-pancreatic surgery).8,19 The limited transferability of these studies affected how relevant the study findings were to the review questions. Details regarding the critical appraisal of included publications are provided in Appendix 4.
Results
Becoming aware of symptoms and seeking care
People described that they became aware of the symptoms that eventually led them to present to medical care and be investigated for suspected pancreatic cancer over time.9,14 The time between when people became aware of their symptoms to when they decided to seek medical care was reported as ranging between less than one month to five years.9,14 This highlights the way in which coming to awareness of symptoms that led to investigations for pancreatic cancer was a process for most people. Symptoms people reported included pain and digestive troubles, sometimes accompanied by fever, nausea or vomiting, and changes in their bowel movements.9,14 Much of the time, people who eventually sought care for suspected pancreatic cancer described their symptoms as intermittent and mild, although re-occurring.9,14 Some described that they ignored the symptoms, hoping they would naturally resolve, or in other cases, people attributed them to common conditions like viruses or colds, or a pre-existing health condition such as diabetes.9,14
A key approach that people described using to manage their symptoms was changing their dietary patterns, and through doing so they sought to isolate the cause of their digestive symptoms.14 This included things like limiting the amount they ate, what they ate, and when they ate. By engaging with self-management and developing alternative plausible explanations for their symptoms, people described that they did not see a need to seek medical care. One participant articulated how she adapted to her symptoms as: “I think you learn to live with it and you just adapt to it and start to make the changes so it doesn’t happen… I think what had happened with me is I couldn’t control it any longer, no matter if I stopped eating things, didn’t eat out, it was happening anyways.”14
As this participant’s words reveal, it was once people could no longer self-manage their symptoms that they began to consider medical care. People’s ability to normalize or attribute their symptoms to other causes changed once their symptoms changed, specifically once they experienced an increase in the frequency or severity of existing symptoms, or that new symptoms arose.9,14 New or more intense pain was highlighted by many people with potential pancreatic disease as being the trigger for seeking medical care.9,14
[I] went down to stay in Dorset, and went to some friends’ for lunch. And that evening I felt really uncomfortable but put it down to sort of the IBS [irritable bowel syndrome]; I think the food was quite rich. But from then on I felt that the pain that I was getting was different and I felt there’s something wrong… wasn’t a pain that I‘d had with any of the IBS symptoms that I had, which is what kept giving me this strong feeling that there is something here in my body that just shouldn’t be there.(p. 5)9
Interestingly, none of the participants raised suspicion of pancreatic disease except for those who had family history of the disease.14
The findings under this heading draw into view how many people first entering the care pathway for pancreatic cancer may have been living with the disease for some time and may not be aware that their symptoms are conistent with those of a serious, life-limiting condition.
Engaging in surveillance: preventing cancer but causing worry
One study explored the experiences of people with a hereditary risk of pancreatic cancer and how they engaged with being monitored for pancreatic cancer.20 Participants described how undergoing pancreatic cancer surveillance, in the form of and MRI and EUS, was a way for them to “do something.” People with a hereditary risk for pancreatic cancer viewed surveillance as a form of prevention, as they hoped it could help them catch the cancer early and avoid the fate of their family member(s).
Despite undergoing surveillance, some expressed uncertainty over the benefit of it in terms of the procedure and the ability of the results to inform a course of action. For example, one participant said: “you guys you [health care providers] don’t have any real screening device for this yet…”20 as he felt that EUS and MRI created exposure to perceived risk (not described) that provided limited benefit. Some did not want to undergo testing if it did not provide actionable information as in the ability to cure the cancer.20
Waiting for test results was described as full of worry and fear and culminated with the wait for the appointment for receiving results. People with a familial risk were troubled as they remembered how their family member(s) had undergone testing and their subsequent journey with cancer.. The shorter the time between testing and the return of test results was found to be helpful to reduce their fear and worry.20
Receiving a diagnosis
Once they decided to seek medical care, people reported different paths to their diagnosis of pancreatic cancer.9 Some described being quickly guided through diagnostic testing by their family doctor, whereas others talked about having to return again and again and persist in bringing up their symptoms before more testing was ordered.9
During the process of undergoing diagnostic investigations for pancreatic disease, people described their frustration when they had a scheduled examination without knowing what it was, or were expecting it to be something else: “I was so disappointed that it was an MRI because the physician had told me ‘We will investigate you and then we will go down with a camera into your belly.’”22
For many, a diagnosis of pancreatic cancer came as a shock.16,23 This was especially true for those who were asymptomatic and self-identified as “healthy”: “I was not unwell, I was fit, I was healthy and that’s about it, and my first 55 years I’ve not spent a day in hospital other than to have my children and fix a broken ankle, so it was a huge shock to us all.”16 This reinforces that people often did not have pancreatic disease or pancreatic cancer in mind as a possible cause for their unexplained symptoms. People described being angry at receiving a diagnosis of pancreatic cancer, angry that they had it and searched for answers as to why they did:23 “The ‘why me’ came on really strong… I couldn’t shake that. This has been thrown at me. I did nothing to deserve it… I never smoked, I don’t drink, I was health conscious, I’m not diabetic. I went through all of the risk factors and had none of them.”23
In the case of those who received a diagnosis of acute pancreatitis, some described they felt a sense of relief and feeling positive once diagnosed, as they had an explanation for their symptoms.22 For those who did not receive a diagnosis, or their diagnosis was idiopathic, they longed to know the cause of their symptoms.22 One participant with idiopathic acute pancreatitis described how: “[i]t is hard that they do not really know why I had it, perhaps it would had felt a little calmer if I knew why… I can’t do anything, I can’t choose not to avoid certain things, I do not know what to do, I guess that’s the problem.”22 Knowing the cause of their pancreatic disease symptoms helped people both emotionally by providing certainty and stability, but also helped them chart a course of action to have some control over their health.
Patient-provider relationships and decision-making
People with pancreatic cancer described how, in light of learning that they had an urgent and life-threatening condition, they relied almost entirely on their physician’s recommendations.7,15,18,24 Some described this as though they felt they had no choice in their treatment decision-making.18,24 They reported being overwhelmed with their diagnosis, and that they had limited interest in details about treatment: “And I didn’t want a second opinion, and I didn’t want to know more about the operation than I already knew. I really, I didn’t want to know. I just wanted someone to look after me and make the decision at that stage, and tell me what to do.”7
Trust was, however, established rather than a given, through the way in which physicians provided information and communicated in an empathetic and kind manner:15,24
He [surgeon] comes across as being a very caring person, a very trustworthy person. I had every confidence in him, and a lot of that was built up over the time that I knew him. I just thought that he was great. He has a wonderful personality, a wonderful character. You know, he always made me feel like I could trust him 100%, he was going to do the best for me.(p. 616)24
Having trust in their physician was a source of emotional support for people navigating their pancreatic cancer and provided reassurance:18,24 “The confidence that [the surgeons] had rubbed off on me, eventually, and we just felt they know what they were doing and they gave you the faith that you’re going to be okay.”24
Trust was placed in their physician, but also in the facility. Participants noted that they appreciated having access to a “cancer centre” or other high-volume specialist centre:18 “Yes, where they do most of the operations. That was the most important thing… [the facility] actually had a very good reputation. And as the head physician told me: Go to X, to Prof. Y. You are in good hands there.”18
This placing of the responsibility for decision making into the recommendations of physicians was also described by people with pancreatic cancer as a recognition of their expertise. People with pancreatic cancer expressed that they did not have the knowledge or expertise to make treatment decisions, and that it was not their role:7,15 I’d only relied on the information they’d given me through the ward staff and I chose that because I always feel that if you try to go into territory that you’re not familiar with then you can only confuse yourself.”7
However, many people who had pancreatic cancer reported that they used the internet throughout their diagnosis and treatment, to help make sense of their diagnosis and what their physicians had said.7 People also used the internet to find out about clinical trials, complementary treatments, and self-management strategies.7,18
People with pancreatic cancer reported that their first encounters with their physician and facility shaped their expectations and experiences of their subsequent visits.8 Bad encounters were described as being where the health care providers appeared to be busy and did not seem to be responsive to patients’ needs. People reported that prior negative experiences led them to remain alert and anxious at their following encounters.8 Having initial positive consultations were seen as facilitating trust throughout follow-up.8
As they engaged in treatment, people with pancreatic cancer described how they began to take a more active role in their care. In particular, they noted that they sought to keep the focus during treatment on their personal priorities.18 A participant said how they negotiated their treatment schedule, saying: “During the operation, one abandons oneself, all parallel planning was put aside; then with the recovery, the desire to go into private planning again returns. And the schedule of the chemo, it competed with the holiday.”18
The role of hope and optimism
People with pancreatic cancer consistently described how they sought out hope even as their condition advanced18 or knew the prognosis was not good.16 In the face of a poor prognosis of pancreatic cancer, people wanted to hear positive messages about their situation.
This desire for optimism was articulated by people as they continued to search for other treatment options such as clinical trials or complementary treatments, and was grounded in the desire for a longer life with family and grandchildren.16,23 Optimism provided security for people, and helped alleviate the uncertainty and anxiety raised by their cancer diagnosis.16 People with pancreatic cancer found this optimism reflected in their consultations with physicians at times: “So you look on the positive side and all the doctors say, ‘No you’ll be right. We’ve caught it nice and early; it hasn’t spread, you haven’t had bad symptoms.” Keeping optimistic and hopeful was seen by many as part of the “battle” against their cancer, and that not going through treatment was “giving up.”16 Information that offers optimism was appreciated by people who were being diagnosed or treated for pancreatic cancer.
Undergoing treatment
For those people who had pancreatic cancer and who were eligible, pancreatic surgery (e.g., Whipple procedure, pancreatic resection) was viewed a source of hope.24 However people described that their body changed post-surgery and left them ill at ease.10,21
When monitoring their response to treatment, specifically through cancer antigen testing, people with pancreatic cancer found positive results offered reassurance, while negative results left them anxious and worried.8 People responded to the “double-edge sword” of antigen testing in a number of ways, with some growing tired of testing and not wanting to know the results. One participant’s experience vividly describes their rejection of testing, and at the same time the perception that their needs were not being met or considered in going through with testing:
I’d already said that I didn’t want any scans. I don’t want any blood tests either. I know it [cancer antigen] has gone up. I know there’s something wrong. I know… again, the nurse pressured me into having it… So, if I’d said no all along I would have been better off and not had all those negative thoughts in my head all the time. And I regret so much I got pressured. Because if I was not pressured the last year [would] have been TOTALLY different from now.(646)8
Others described feeling that the emphasis on antigen testing and scans overshadowed their symptoms and left them unable to discuss them with their physician.10
People also described that once treatment for their pancreatic cancer was completed, they worried how they would fare without frequent surveillance which offered some a sense of security.21,23 Part of this was the ability to get support for symptoms and how to self-manage them.21 “Now that I have been discharged they do not care about me as much as before. So now I’m discharged, written off somehow.”21 People recovering from pancreatic cancer were reported as appreciating access to rehabilitation programs as it offered this support in the community and enabled them continued access to support.10
Some articulated that they struggled to decide when to stop active treatment.16,18 People differed in their views on whether it was the physician’s responsibility to stop treatment, or theirs.18 On one view, as they had gained experience as a patient, they sought to take more control over their treatment decisions.
Well, so a chemo-patient who just went from chemotherapy to chemotherapy also becomes a specialist… And he drifts more and more into a life decision, a life situation, where he knows that he has to now take decisions and responsibility for himself, and this can’t be done by a doctor…(p. 2447)18
For those who chose it, contrary to “giving up”, ending treatment moved them towards a “good death” and was to assert control over their lives in the face of a terminal cancer diagnosis.16 People sought to live in the present and make the most of the time they had left, as one person with advanced pancreatic cancer said of their decision to end treatment: “[I]t probably took a couple of months for us to say right well we need to move on and just make each day count.”16
Recovery and an uncertain future
After surgical resection for their pancreatic cancer, some people transitioned again to feeling healthy. Health was not only physical, but was grounded in the ability to control their symptoms so that they could do activities that gave their lives meaning, including their independence and return to hobbies.21 One participant described their sense of health and independence again as uplifting: “Because I can, that I’m feeling well and can go out, can do various things without having to ask for help, just the fact that I’m able to do it gives you a kick being able to manage things.”21
However, others with pancreatic cancer continued to struggle with symptoms, including pain, fatigue, abnormal bowel movements, decreased appetite and nausea and vomiting.8,19 Their disrupted gut and fatigue affected their ability to do activities they enjoyed. They described a variety of self-management strategies, including self-medicating, adjusting their treatment regime, and stopping treatment.10,19 People with pancreatic cancer described how they experimented with dietary modifications, including different types or amounts of food during and post-treatment.10,16,21
Many people with both pancreatic cancer and chronic pancreatitis reported feeling that uncertainty hung over their sense of a future because of the likelihood of the cancer returning23 or having another life-threatening exacerbation.17 As one participant put it: “No matter what kind of wonderful day you’re having, you know that these black clouds are there and on any day, life could change again in a minute. So you never ever really are without feeling that.”23 People coped by living in the present, and focusing on short-term planning.23
