Promoting Early Cancer Presentation Group

Nature and duration of symptoms of cancers of the lung: report of a study of nature and duration of symptoms

Fiona Warburton, Lindsay Forbes November 2013

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Introduction The 2010 Cancer Patient Experience Survey included 2545 lung cancer patients with ICD-10 code C340 to C349 who agreed they could be re-contacted for further research. One thousand two hundred and thirty (48.3%) of these were known to be alive at the start of survey fieldwork for the study of nature and duration of cancer symptoms (9 Nov 2011). Two hundred patients were randomly selected from these and sent a questionnaire about the nature and duration of their symptoms. Of these 200 a further 16 died and 142 (77.2%) returned a completed questionnaire. All respondents had been diagnosed in the year before the 2010 Cancer Patient Experience Survey.

Demographic characteristics of patients Ethnicity was available for 130 participants. One hundred and twenty six (88.7% of the sample) described their ethnicity as White. Age at diagnosis was available for 137 patients. The mean age at diagnosis was 64.9 years, with the youngest being 19 and the oldest 94 at the time of diagnosis.

Route to diagnosis Ninety one (64.1%) were referred to hospital by their GP, 13 (9.2%) via A&E, and 32 (22.5%) via another route. There were no data on this available for six patients

Symptoms that led to diagnosis Table 1 shows the symptoms reported by the 130 patients who reported any symptoms. The most common symptom was cough (58, 44.6%). Table 1: Reported symptoms leading to diagnosis – lung cancer patients Symptom Cough Shortness of breath A chest infection that didn’t go away Pain in chest or shoulder Extreme fatigue or tiredness Coughed up blood Unexpected weight loss Croaky voice Swelling in face or neck Other

n (%) 58 (44.6) 44 (33.8) 37 (28.5) 27 (20.8) 24 (18.5) 17 (13.1) 14 (10.8) 8 (6.2) 3 (2.3) 40 (30.8)

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Fifty one participants reported one symptom only. Table 2 shows the symptoms they reported. Table 2: Symptoms of those who reported one symptom only –lung cancer patients Symptom A chest infection that didn’t go away Cough Coughed up blood Shortness of breath Pain in chest or shoulder Swelling in face or neck Unexpected weight loss Extreme fatigue or tiredness Croaky voice Other

n (%) 10 (19.6) 7 (13.7) 7 (13.7) 5 (9.8) 5 (9.8) 2 (3.9) 1 (2.0) 0 (0.0) 0 (0.0) 14 (27.5)

Reasons for not going to the doctor Of the 130 patients who reported at least 1 symptom, 59 (45.4%) reported that something had put them off going to the doctor. The most common reason (55, 42.3%) was not realising the symptom was serious. Table 3 shows the frequency of reporting for each of specific barriers to symptomatic presentation. These were relatively rarely reported. Table 3: Reported barriers to symptomatic presentation – lung cancer patients Barrier reported I was worried about wasting the doctor’s time It was difficult to make an appointment with the doctor I had too many other things to worry about at the time I was too busy to make time to go to the doctor I was too scared to go and see the doctor I was too worried about what the doctor might find I found my doctor difficult to talk to I didn't feel confident talking about my symptoms with the doctor I was too embarrassed to go to see the doctor It was difficult to arrange transport to the doctor’s

n (%) 8 (6.2) 8 (6.2) 2 (1.5) 2 (1.5) 2 (1.5) 2 (1.5) 2 (1.5) 1 (0.8) 0 (0.0) 0 (0.0)

Duration of symptoms For the 130 patients 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 those patients for whom this information was not available (n=12) we used the time between the symptom first starting and seeing a GP or presenting at accident & emergency, where a full date had been given at both time points, to calculate duration of

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symptoms. We were able to calculate duration of symptoms for 119 out of the 130 patients who reported any symptoms (91.5%) In total, 13 (10%) delayed presentation by more than 3 months. Table 4 shows the reported duration of symptoms. The numbers in the table are small and therefore the percentages should be interpreted with caution. Those with “other” symptoms are not included in the table.

Table 4: Reported duration of symptoms – breast cancer patients, by symptom

Extreme fatigue or tiredness Pain in chest or shoulder Cough Shortness of breath A chest infection that didn’t go away Unexpected weight loss Coughed up blood Croaky voice Swelling in face or neck

4 weeks or less N (%) 9 (37.5) 13 (48.1) 26 (44.8) 18 (40.9) 22 (59.5) 8 (57.1) 10 (58.8) 6 (75.0) 3 (100.0)

> 4 weeks but 3 months N (%) 5 (20.8) 5 (18.5) 8 (13.8) 6 (13.6) 5 (13.5) 1 (7.1) 1 (5.9) 0 (0.0) 0 (0.0)

missing N (%) 5 (20.8) 3 (11.1) 4 (6.9) 5 (11.4) 1 (2.7) 2 (14.3) 2 (11.8) 1 (12.5) 0 (0.0)

Risk factors for delay in presentation Table 5 shows the proportion delaying presentation for three months or more by age, gender, index of multiple deprivation (IMD), symptom and whether or not they realised the symptom was serious. It was not possible to calculate adjusted relative risks because of small numbers. The results show that the only symptom that was significantly related to delay in presentation was extreme fatigue or tiredness. There was relationship between delay in presentation and not realising the symptom was serious. Very few patients reported barriers to symptomatic presentation and therefore we did not analyse their association with delay in presentation.

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Table 5: Risk factors for delay in symptomatic presentation among breast cancer patients reporting any symptoms Delay in presentation n

Relative risk for delay in presentation (95% CI)

(%)

Unadjusted

11/80

(13.8)

1∙00

2/35

(5.7)

0.42 (0.10 to 1.78)

Male

7/66

(10.6)

1.00

Female

6/53

(11.3)

1.07 (0.38 to 2.99)

1/12

(8.3)

1∙00

3/28

(10.7)

1.29 (0.15 to 11.15)

6/26

(23.1)

2.77 (0.37 to 20.53)

2/30

(6.7)

0.80 (0.08 to 8.02)

Most deprived

1/23

(4.3)

0.52 (0.04 to 7.63)

Extreme fatigue or tiredness

5/19

(26.3)

3.29 (1.21 to 8.98)

Pain in chest or shoulder

5/24

(20.8)

2.47 (0.89 to 6.89)

Cough

8/54

(14.8)

1.93 (0.67 to 5.54)

Shortness of breath

6/39

(15.4)

1.76 (0.63 to 4.88)

A chest infection that didn’t go away

5/36

(13.9)

1.44 (0.51 to 4.10)

Unexpected weight loss

1/12

(8.3)

0.74 (0.11 to 5.23)

Coughed up blood

1/15

(6.7)

0.58 (0.08 to 4.13)

Croaky voice

0/7

(0.0)

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Swelling in face or neck

0/3

(0.0)

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(20.0)

2.80 (1.01 to 7.74)

Age