This article explores how people with pancreatic cancer interpreted prediagnostic s and symptoms, and what triggered them to seek medical help for symptoms that occurred intermittently.
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Thematic analysis of prediagnostic symptom descriptions drawn from a qualitative interview study of people with experiences of pancreatic cancer. Such symptoms were rarely acted upon until a pattern became apparent, the frequency of symptom episodes increased, there was a change in the nature of the intermittent symptoms or additional symptom s appeared.
These findings build on social science theories of consultation behaviour. Our study—the largest reported collection of qualitative interviews with people with pancreatic cancer—reports for the first time that symptoms of an intermittent nature may precede a pancreatic cancer diagnosis. Patients and potentially their doctors as well may be falsely reassured by symptoms that come and go. Pancreatic cancer might be identified at a stage where curative treatment is more likely if there were greater awareness that intermittent gastrointestinal symptoms can have a serious cause, and if patients with intermittent pancreatitis-like symptoms were investigated more readily.
As is appropriate for this qualitative approach, we aimed for maximum variation and not numerical representation; we included people with a wide range of backgrounds and experiences, not just those who had particular concerns about their prediagnostic symptom experiences or diagnostic delay.
The finding on intermittent symptoms emerged during analysis—we did not ask specifically whether symptoms occurred intermittently. Our study is based on people's recall of events, which is considered a bias in some research traditions, yet these s also emanate from those who, having been diagnosed with a life-threatening illness, are likely to have thought long and hard about how and when their cancer started.
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Using qualitative, interpretive methods allows us to analyse and learn from these recollections. Early symptoms of pancreatic cancer are vague and non-specific; more indicative s such as jaundice occur late in the disease, hence most cases are diagnosed at an advanced stage.
There have been a of studies of prediagnostic symptoms in pancreatic cancer, including a prospective cohort study of a primary care database with a predefined list of symptoms, 4 retrospective analyses of primary care data 5 or hospital records, 6—8 structured interviews using predefined lists of symptoms 9 10 or a combination of methods.
A variety of theories and models have been proposed to explain help-seeking behaviour when symptoms are present. Other theories about how people appraise symptoms and make decisions about seeking help include those described by Safer et al19 Andersen et al 20 and Scott et al. In this article, we present an analysis of one theme from a wider qualitative study of people affected by pancreatic cancer: we explore how they interpreted prediagnostic s and symptoms, why lengthy intervals occurred before diagnosis and what triggered them to seek medical help for symptoms that were intermittent.
We recruited participants from across the UK through distribution of volunteer information packs via pancreatic cancer specialist doctors and nurses, GPs, pancreatic cancer organisations, members of our project advisory panel and the snowball method in which participants recruit other people they know with the same condition. Packs included an information sheet, reply slip and return envelope; those wanting to know more about the study contacted the research team.
A few people responded to a newspaper advertisement or contacted the research team after hearing about the project in the media or by word of mouth. We aimed for a maximum variation sample, 23 24 from different social backgrounds and ethnic groups from different parts of the UK.
We wanted to capture a diverse range of experiences of pancreatic cancer including people who had been recently diagnosed, those in remission and those receiving palliative care.
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Using our experience we estimated that around 40 interviews would be needed to reach data saturation ref. We recruited 40 participants, including 8 who had helped to care for a relative who had died from pancreatic cancer; 2 of the 40 had a neuroendocrine tumour. In the first, narrative, section of the interview, respondents were asked to tell, in their own words and without interruption from the researcher, what had happened to them from the time when they had first suspected something was wrong.
A semistructured section followed to explore issues in more depth and to ask about topics that had not been mentioned. This included more detailed questioning about symptom recognition and interpretation, help-seeking actions taken and diagnostic investigations. The interviews were audio recorded, transcribed verbatim, checked for accuracy and returned to the participant so they could read the text and remove or clarify sections if they wished.
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The authors read and re-read the data, constructed a coding frame, coded the data in QSR N6 a qualitative data-indexing package according to themes using the method of constant comparison, 25 and examined themes across the whole dataset, as well as in the context of each person's interview. In addition, all the s and symptoms mentioned in the interviews were listed, and where participants mentioned dates or time periods these time intervals were used as an approximate indication of any temporal delays. We use participant pseudonyms throughout this article, and hesitations and repeated words have been removed from the quotes to aid readability.
People reported the approximate time from first recognising a symptom to diagnosis as ranging from less than a month to several years see table 1.
The s and symptoms reported in our study mirror those from studies see box 1with the exception of: a perceived lump under the ribs, a pulsation under the ribs and intermittent rectal bleeding, all of which may have been s of advanced rather than early pancreatic cancer or of an unrelated condition.
Symptoms that occurred intermittently included epigastric pain, digestive difficulties, occasionally with fever, nausea or vomiting and bowel changes.
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These symptoms did not only occur intermittently in our study; some people recalled that one or more of these gastrointestinal symptoms had been persistent or gradually white free chat lines on old buckingham since they first noticed it. Others said they had experienced isolated symptom episodes weeks or months apart, typically after consuming a large or particularly rich meal, or large quantities of alcohol, or at night.
For some, the episodes had gradually become more frequent over time until the symptoms were constant. In some cases, intermittent white free chat lines on old buckingham episodes preceded any other symptoms, while in others they occurred in parallel to other, persistent, symptoms.
Some people recalled one isolated symptom episode before other persistent symptoms led to the cancer diagnosis.
People said they had often ignored their intermittent symptoms at first because they had been mild in nature so had not considered them serious enough to see a doctor about. Even when intermittent symptoms had been more severe, people had not always acted on them because they had been reassured by having felt well in between episodes and had not expected the symptoms to recur.
R: Being in the wine trade we used to entertain a white free chat lines on old buckingham and we used to go down to Glyndebourne with customers to see the opera. And we'd obviously consume a few good bottles or five and I found, especially that after I'd drunk quite a lot, that I would suddenly wake up in the night getting the shivers, serious doses of the shivers and sort of incredible indigestion and I would then sort of sweat like mad for the next twelve hours and it really was pretty uncomfortable.
R:I never actually, I don't think I ever actually took that particular symptom because it would clear up pretty quickly.
I suppose I would have it three or four times a year, so it wasn't something that happened frequently and only tended to happen I think when I sort of had rich food and quite a lot of vino. For instance, some attributed abdominal pain or changes in bowel habits to possible irritable bowel syndrome IBS.
Some said they had ly been diagnosed by their doctor as having IBS; it seems likely that GPs are also sometimes reassured by the intermittent nature of gastric symptoms and do not suspect cancer. I was diagnosed a couple of years ago with IBS symptoms generally the sickness, diarrhoea, stomach pains, etc. So I had some tests and that done. And it was decided that yes I did have IBS and probably getting older too or a sluggish digestive system.
The tests that I had done showed nothing seriously wrong, so I just went away and really sort of changed diet, etc. It tended to sort of affect my life basically on a … in a sense of fairly monthly cycle. I'd be ok and then it would flare-up and I'd have a few nights of discomfort and pains and upset stomachs, etc.
White free chat lines on old buckingham basically sort of had it in my life. Although Marcus quoted above recognised that his indigestion with fever recurred several times in similar circumstances, this alone was not enough to make him seek medical help.
However, others did. Drawing on social science theories of consultation behaviour we have identified specific triggers to seeking help when symptoms have been intermittent.
Such symptoms were rarely acted on until a pattern became apparent, the frequency of symptom episodes increased, there was a change in the nature of the intermittent symptoms or additional symptom s appeared. We illustrate these triggers below. It happened about three times that I had, I was getting an increasing amount of sort of wind almost and burping a lot. That was the other thing that was very odd.
And then I'd notice a few days later, sometimes I, each time I felt a little bit nauseous for a couple of days and then I'd pass a very abnormal coloured stool, as if I'd got a gallstone or something.
Then months, and I hadn't noticed at that time that actually I had been feeling a little bit nauseous before. And so I went to, and it happened again actually just over the New Year. Paddy also recognised that his repeated bouts of severe abdominal pain followed a pattern, but because they always occurred at night he did not see a doctor until the pain had disappeared. And part of the early days that I remember was the sort of oddity of having these pains which they, if they started at say 7 o'clock in the evening, they followed a particular course till about sort of 2 or 3 o'clock that morning.
They were absolutely the same each time.
But they never seemed to happen when I could quickly get to a doctor. And one of the early sort of irritations I remember of this problem was that I never seemed to be able to get to a doctor when I was actually in the pain. So by the time I actually saw a doctor, perhaps the next morning if I was lucky, or a few days later, the pain had gone. Some people sought medical help after recognising that their symptom episodes had become more frequent or changed from intermittent to persistent.
I didn't go to the doctors you see because I was being sick once a week, twice a week. And then it got to three times a week, and built up to daily, you know, it seemed to be every time I got to the top of the stairs. I'd just made the toilet bowl and literally everything came up. Others went to the doctor after they felt the nature of their intermittent symptom had changed.
I'm not having this anymore; we have to do something about it. And that evening I felt really uncomfortable but put it down to sort of the IBS; 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. And I wasn't happy with the way I felt.
There's something definitely wrong. And, again, I think it was just more about being aware of my own body and knowing that it was a difference, it was a change from what had gone on before, any of the symptoms. The fourth trigger was the arrival of another symptom on top of the original intermittent one s.
Marcus quoted above did not report his repeated indigestion and fever to his GP until he experienced an acute pain in his side. Ralph also waited until he had experienced several white free chat lines on old buckingham of pain before acting on his earlier changed bowel habits:. My bowel movements were pretty horrendous at times with the, particularly floating stools and soft motions and the need to go to the loo suddenly very quickly, particularly after a meal. And at the time I put it down to the male menopause and people thought it was perhaps irritable bowel syndrome. And that went on for some time.
Some people told us that their GP ordered tests that quickly led to a pancreatic cancer diagnosis. In other cases, the diagnostic process was more protracted while the GP tested or treated for suspected benign causes of the intermittent symptoms.
For instance, Alice was prescribed omeprazole for intermittent indigestion and had an endoscopy to rule out an infection, and Finlay's recurrent epigastric pain and indigestion were attributed to a probable hiatus hernia until his pain became so severe that he was suspected of having a heart attack and was taken to hospital. Rachel's experience highlights how difficult it can be for either the patient or the GP to recognise that there is a serious problem when symptoms are intermittent and non-specific.
Two years before her pancreatic cancer was diagnosed, Rachel consulted her doctor about a pain under her left rib, which she suspected was a pulled muscle after doing heavy gardening work. The GP examined her, agreed that it probably was a pulled muscle and suggested she should take paracetamol. The pain seemed to disappear but recurred a few weeks later and seemed to be worst when she was lying down at night. A battery of tests at the hospital found no heart abnormality.
So I returned back to my GP to have a chat with her again about it. And she examined me very carefully again and said perhaps there was a possibility of a digestive problem. So she prescribed some stuff for me to take before meals. This had no effect. Meanwhile, Rachel had tried to eliminate fatty and other unhealthy foods from her diet. When she again returned to the GP, she was referred for a scan; a conversation with the scan technician indicated that the GP suspected a gallstone.