Table 1 Diagnostic pathway elements, survey items generated from Aarhus Statement definitions, and participant responses

Route to diagnosis (eg through visit to GP, via accident and emergency etc)

Which of the following best describes the events which led to your diagnosis of cancer?

• I had symptoms/I noticed a bodily change and went to see a doctor (eg GP, family doctor)

• I had symptoms/I noticed a bodily change and was taken to Accident and Emergency

• I was being investigated by my doctor(s) for another problem during which time the cancer was discovered

• I had a cancer screening test (eg as part of a programme offered by a health professional)

interviewer: OK so you don’t think you would fit it either of these?

‘well what he’s saying he went to A&E but he wasn’t diagnosed there’

(colorectal patient)

‘there’s sometimes a bit of overlap, so I think for the majority of people those four options are appropriate. There are times when someone might have symptoms, but then attend A&E’ (GP)

I suppose if you were to add, I was being investigated or monitored by my doctor for another problem during which the cancer was discovered, then that covers it’ (CDR)

what are we talking about here? Are we trying to satisfy the sociologists? That’s not the purpose. I wouldn’t use anything like ‘bodily change’; I would use words, proper language, like ‘something was wrong with me’ (CDR)

The key symptom/health problem which prompted action (eg visiting a doctor) by patient

• Looking back to the events which led to your diagnosis of cancer, what was the main health problem or symptom that made you contact a doctor?

• Can you recall any other symptoms or health problems which you now believe were associated with the cancer?

‘I think that’s a very difficult question, sometimes it’s easy, mine was passing blood, other times it could be, as you say, a subtle thing that you don’t realise’ (colorectal patient)

‘So for alarm symptoms, I think it’s easier. But we know that most cancers don’t actually present with alarms symptoms, so I think for those cancers that don’t present with an alarm symptom, then it…then I think it is a bit more problematic’ (GP)

Date of first presentation to primary care

• When did you first go to your general practitioner with your symptoms of cancer?

• When did you first seek help for the symptoms which you now believe were caused by your cancer?

In response to a patient scenario: ‘I think I would go for January 2008 on the grounds that the cough was somehow kind of different and that the cough had changed, so he might have had a kind of smoker’s cough before but it was different for January 2008’ (lung patient)

‘one of the difficulties is….. where you’ve got somebody with a chronic recurring problem going on for years, you know, without cancer being, you know, maybe at the very first presentation cancer being an issue, because of the cough or the diarrhoea or abdominal pain, but then once it’s excluded, you say, no, you’ve got irritable bowel syndrome or, you know, you’ve got COPD and then these patients come back time and time again and then these two incidences that you’ve documented, you know, they’re people with the same symptoms for eight, 10 years….it’s the horrible difficulty that we have in primary care saying, right, when is this exacerbation of COPD or an exacerbation of irritable bowel syndrome’ (GP)

Volume/extent of pre-diagnostic activity

• How many times did you visit a GP/primary care physician/family doctor and or hospital about your symptoms before your cancer was diagnosed?

• How many different doctors did you see in the lead up to your diagnosis?

• How many different doctors/hospital departments did you visit in the lead up to your cancer diagnosis?

‘it probably also depends on the complexity of their investigation. Some will be going quite easily through a fast track pathway and others they will…and of course it’s those patients that we want to be able to make a distinction between. Would it be easier to have boxes they can tick off, two, four, six?’ (CDR)

‘It’s a very fluid thing actually, so a lot of the…and a lot of stuff happens to…at the same time and in different…I find that really difficult to make a clear distinction between one and the other’ (GP)

‘maybe you need to say how many times you’ve been to the GP, how many times, how many hospital visits did you have before the cancer diagnosis, separate into two questions (colorectal patient)

Date of referral

• When did your GP refer you to a specialist to investigate you for symptoms of cancer?

• When would you say the responsibility for further diagnosis and management of your cancer transferred from your GP to specialist cancer services?

‘the GP may refer somebody for investigation it might be a x-ray or a CT scan but if you were saying referred to a specialist that comes after the GP has got the results of the x-ray or the scan, so in a sense there’s two things, there’s one referral for investigation which might not come to anything and then there’s referral to the specialist, so I think we just need to be clear which one we’re looking for’ (lung patient)

‘I just thought it was another process, the thing that I was going through and I thought they all worked together and my GP was there to guide me to these people eh, but I could still go back and see my GP whenever I wanted, do you know what I mean, so it wasn’t like he cut off from, it was not left to the specialist, you still have to visit your GP and that, not as much obviously, but he was always there to talk as well if I wanted’ (colorectal patient)

‘it might go back to the definition of referral or how it’s understood, because I suppose it seems that your understanding is not that the responsibility is gone forever and the patient has been completely handed over because you’ll still be involved in their care. Which is why I think the word transferred we’ve used here is wrong’ (GP)

Date of diagnosis

• When was your cancer diagnosed?

• What are you basing this date on? (eg date you were told, date of operation, date of tests etc)

‘Yeah I mean it’s difficult because is somebody saying to you I’m 90% sure that this is malignant, it’s cancer, is that a confirmed diagnosis or was it the next week when that same person rang me up and he said ah we’ve had the result of the biopsy and I was right, so from my point of view I would say it was when he told me he was 90% sure, because for me that’s a fairly strong indication’ (colorectal patient)

‘I would say for me as well the fact that it was the consultant that did my colonoscopy, that was when I found out that I had cancer, not when I went to see the oncologist or the surgeon or anything, they confirmed it obviously but it’s the, I would say it’s the first person, I suppose like you were saying the first person that mentions the c word’ (colorectal patient)

‘You never forget the date, you remember the date he told you you had cancer’ (lung patient)

‘are you meaning at what stage did the patient understand the diagnosis, rather than when was the GP told by the hospital, this patient has got X wrong with him? They’re not simultaneous’ (non-cancer patient)

‘you could argue than when the bronchoscope actually looks at the…eyeballs the tumour, they’re able to say, you’ve got cancer, but I think most people would wait for the histology’ (GP)