Table 1

Positive response categorisation in CPES diagnosis-related questions

QuestionResponseExperience*
1. Before you were told you needed to go to hospital about cancer, how many times did you see your GP (family doctor) about the health problem caused by cancer?None—I went straight to hospitalUninformative
None—I went to hospital following a cancer screening appointment†
I saw my GP oncePositive
I saw my GP twice
I saw my GP three or four timesNegative
I saw my GP five or more times
Don’t know/can’t rememberUninformative
2. How do you feel about the length of time you had to wait before your first appointment with a hospital doctor?I was seen as soon as I thought was necessaryPositive
I should have been seen a bit soonerNegative
I should have been seen a lot sooner
3. How long was it from the time you first thought something might be wrong with you until you first saw a GP or other doctor?Less than 3 monthsPositive
3–6 monthsNegative
6–12 months
More than 12 months
Don’t know/can’t rememberUninformative
5. Beforehand, did you have all the information you needed about your test?YesPositive
No, I would have liked more informationNegative
Don't know/can't rememberUninformative
6. Overall, how did you feel about the length of time you had to wait for your test to be done?It was about rightPositive
It was a little too longNegative
It was much too long
Don’t know/can’t rememberUninformative
7. Were the results of the test explained in a way you could understand?Yes, completelyPositive
Yes, to some extentNegative
No, I did not understand the explanation
I did not have an explanation but would have liked one
I did not need an explanationUninformative
Don’t know/can’t remember
8. When you were first told that you had cancer, had you been told you could bring a family member or friend with you?YesPositive
NoNegative
Told by phone or letter
Don't know/can't rememberUninformative
9. How do you feel about the way you were told you had cancer?It was done sensitivelyPositive
It should have been done a bit more sensitivelyNegative
It should have been done a lot more sensitively
10. Did you understand the explanation of what was wrong with you?Yes, I completely understood itPositive
Yes, I understood some of itNegative
No, I did not understand it
Don't know/can't rememberUninformative
11. When you were told you had cancer, were you given written information about the type of cancer you had?Yes, and it was easy to understandPositive
Yes, but it was difficult to understandNegative
No, I was not given written information about the type of cancer I had
I did not need written informationUninformative
Don't know/can't remember
  • *Scoring is as per NHS classification, except for Q3 where no NHS scoring was available. Classification for Q3 was by author consensus.

  • †Patients who went to hospital after screening were Uninformative from the study population, so there were none in this group.

  • CPES, Cancer Patient Experience Survey; GP, general practitioner; NHS, Health Service England.