Promoting Early Presentation Group Nature and duration of symptoms of pancreatic cancer
Promoting Early Presentation Group
Nature and duration of symptoms of pancreatic cancer
Fiona Warburton, Farhana Haseen, Amanda Ramirez, Lindsay For...
Nature and duration of symptoms of pancreatic cancer
Fiona Warburton, Farhana Haseen, Amanda Ramirez, Lindsay Forbes, March 2014
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Summary One hundred and thirteen patients with pancreatic cancer who had participated in the 2010 Cancer Patient Experience Survey completed a questionnaire at the end of 2011 about their symptoms. One hundred and six cancer patients reported any symptoms. Skin went yellow was the most common symptom reported for pancreatic cancer. Almost 25% of pancreatic cancer patients reported that they had not realised the symptom was serious, but these patients were not more likely to delay presentation. The most common symptoms reported by these patients was faeces pale and urine dark in colour Just over 12 percent of pancreatic cancer patients delayed presentation by more than three months. Pain or discomfort in back was the significantly related to delaying for 3 months or more, as was any pain symptom. Faeces pale and urine dark in colour and skin going yellow were both significantly related to delaying by less than 3 months.
Introduction The 2010 Cancer Patient Experience Survey included 465 patients with pancreatic cancer who agreed they could be re-contacted for further research. One hundred and eighty one (38.9%) of pancreatic cancer patients were known to be alive at the start of survey fieldwork (9 Nov 2011). Two hundred patients with pancreatic cancer were randomly selected from these and sent a questionnaire about the nature and duration of their symptoms. One hundred and thirteen (56.5%) pancreatic cancer patients returned a completed questionnaire. Eighty nine (78.8%) had been diagnosed in the year before the 2010 Cancer Patient Experience Survey, 22 (19.5%) between 1 and 5 years previously and 2 (1.8%) more than 5 years previously.
Demographic characteristics of patients Ethnicity was available for 105 (92.9%) of patients, of whom 97.1% reported that they were of White ethnic group. Age at diagnosis was available for 81 (71.7%) patients. The mean age at diagnosis was 62.8 years, with the youngest being 36 and the oldest 77 at the time of diagnosis. Quintile of index of multiple deprivation (IMD) was available for 112 (99.1%) respondents. Thirty three (29.2%) of respondents were in the least deprived quintile of deprivation (according to the distribution of IMD in England) and 9 (8%) were in the most deprived quintile.
Route to diagnosis Eight one (71.7%) of patients had been referred to hospital by their GP, 8 (7.1%) had presented via A&E, and 18 (15.9%) via an unspecified route. Route to diagnosis was missing for 6 (5.3%) of patients.
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Nature of symptoms that led to diagnosis Table 1 shows the symptoms reported by the 106 pancreatic cancer patients who reported any symptoms Table 1. Reported symptoms by symptom type Symptom
n (%)
Pain symptoms
42 (39.6)
Pain or discomfort in tummy
31 (29.2)
Pain or discomfort in back
21 (19.8)
Other pain
2 (1.9)
Urine & bowel symptoms
49 (46.2)
Faeces pale and urine dark in colour
42 (39.6)
Bowel problems
7 (6.6)
Urine problems
2 (1.9)
Systemic Symptoms
50 (47.2)
Loss of appetite
16 (15.1)
Unexpected weight loss
26 (24.5)
Extreme fatigue or tiredness
26 (24.5)
Other symptoms Feeling sick
13 (12.3)
Indigestion or heartburn
19 (17.9)
Feeling unusually full after food Skin went yellow Itchy skin
9 (8.5) 50 (47.2) 9 (8.5)
Twenty four (22.6%) pancreatic cancer patients with symptoms reported one symptom only; of these commonly reported symptom was skin went yellow (6; 25%).
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Reasons for not going to the doctor Of the 106 pancreatic cancer patients who reported at least 1 symptom, 38 (35.8%) reported that something had put them off going to the doctor. The most common reason (25; 23.6%) was not realising the symptom was serious. Among these:
13 had systemic symptoms o 7 loss of appetite o 7 extreme fatigue or tiredness o 8 unexpected weight loss 13 had urine or bowel symptoms o 11 faeces pale and urine dark in colour o 2 bowel problems o 1 urine problems 13 had pain o 10 pain or discomfort in tummy o 8 pain or discomfort in back o 1 other pain 10 skin went yellow 1 itchy skin 3 feeling sick 4 indigestion or heartburn 4 feeling unusually full after food
Table 2 shows the frequency of reporting for each of specific barriers to symptomatic presentation. Pancreatic cancer patients rarely reported that anything might put them off to see the doctors when they had symptoms, with the most frequent barrier being worry about wasting the doctors’ time (5; 4.7%) Table 2: Reported barriers to symptomatic presentation in pancreatic cancer patients who have had at least 1 symptom Barrier reported
n (%)
I was worried about wasting the doctor’s time
5 (4.7)
I found my doctor difficult to talk to
4 (3.8)
I had too many other things to worry about at the time
2 (1.9)
I was too busy to make time to go to the doctor
2 (1.9)
It was difficult to make an appointment with the doctor
1 (0.9)
I was too worried about what the doctor might find
1 (0.9)
I didn't feel confident talking about my symptoms with the doctor
1 (0.9)
I was too embarrassed to go to see the doctor
0 (0.0)
I was too scared to go and see the doctor
0 (0.0)
It was difficult to arrange transport to the doctor’s
0 (0.0)
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Duration of symptoms For the 106 patients with pancreatic cancer who reported any symptoms, duration of symptoms was calculated using the question “How long was it from the time you noticed these MAIN health problems or symptoms and first seeing a GP or hospital doctor?” For patients for whom this information was not available (n=6) we used the time between the symptom first starting and seeing a GP or presenting at accident and emergency, where a full date had been given at both time points, to calculate duration of symptoms. We were able to calculate duration of symptoms for 100 out of the 106 patients who reported any symptoms (94.3%). In total, 13 (12.3%) pancreatic cancer patients had duration of symptoms’ greater than 3 months. Table 3 shows the reported duration of symptoms. Some of the numbers are small and therefore the percentages should be treated with caution. Table 3: Reported duration of symptoms –pancreatic cancer patients, by symptom Symptoms 4 weeks but 3 months
missing
Pain symptoms
19 (45.2)
11 (26.2)
10 (23.8)
2 (4.8)
Pain or discomfort in tummy
15 (48.4)
8 (25.8)
6 (19.4)
2 (6.5)
Pain or discomfort in back
8 (38.1)
6 (28.6)
6 (28.6)
1 (4.8)
Other pain
2 (100.0)
0 (0.0)
0 (0.0)
0 (0.0)
Urine & bowel symptoms
34 (69.4)
11 (22.4)
4 (8.2)
0 (0.0)
Faeces pale and urine dark in colour
33 (78.6)
7 (16.7)
2 (4.8)
0 (0.0)
Bowel problems
1 (14.3)
4 (57.1)
2 (28.6)
0 (0.0)
Urine problems
1 (50.0)
0 (0.0)
1 (50.0)
0 (0.0)
Systemic Symptoms
26 (52.0)
11 (22.0)
8 (16.0)
5 (10.0)
Loss of appetite
6 (37.5)
5 (31.3)
4 (25.0)
1 (6.3)
Unexpected weight loss
13 (50.0)
5 (19.2)
4 (15.4)
4 (15.4)
Extreme fatigue or tiredness
12 (46.2)
7 (26.9)
5 (19.2)
2 (7.7)
Feeling sick
10 (76.9)
1 (7.7)
1 (7.7)
1 (7.7)
Indigestion or heartburn
8 (42.1)
8 (42.1)
3 (15.8)
0 (0.0)
Feeling unusually full after food
4 (44.4)
2 (22.2)
3 (33.3)
0 (0.0)
Skin went yellow
40 (80.0)
7 (14.0)
2 (4.0)
1 (2.0)
Itchy skin
7 (77.8)
1 (11.1)
1 (11.1)
0 (0.0)
Other symptoms
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Risk factors for duration of symptoms >3 months Table 4 shows the demographic characteristics of those patients who delayed. Table 4: Demographic characteristics of patients whose duration of symptoms was >3months n (%) Age Group Gender IMD
3 months by symptom and whether or not they realised the symptom was serious. Only symptoms reported by at least 20 patients are included, as well any pain symptom, any urine or bowel symptom and any systemic symptom.. It was not possible to calculate relative risks adjusted for age, sex and IMD because of small numbers. Faeces pale and urine dark in colour (RR 0.23 95% CI 0.05 to 0.95) and skin going yellow (RR 0.17 95% CI 0.04 to 0.73) were both significantly related to delaying for less than 3 months. Pain or discomfort in back was significantly related to delaying for 3 months or more (RR 2.80 95% CI 1.13 to 6.96), as was any pain symptom (RR 3.2 95% CI 1.18 to 8.68) . Not realising the symptom was serious was not related to delay. We did not look at the relationship between duration of symptoms >3 months and barriers to symptomatic presentation because of the small number of participants reporting any barriers.
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Table 5: Risk factors for delay in symptomatic presentation among pancreatic cancer patients reporting any symptoms Delay in presentation
Unadjusted Relative risk for delay in presentation (95% CI)
