Cancer waiting times standards in Scotland: clinical review

Appendix D: Public/patient questionnaire and results

Cancer Waiting Times Research

Summary of Results

Prepared by Kantar TNS for Scottish Government

The research was carried out in compliance with our certification to ISO 9001 and ISO 20252 (International Service Standard for Market, Opinion and Social Research).

Q005: FIRSTACT: Matrix

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If you spotted a persistent change in your health (such as unexpected weight loss, a change in your patterns of going to the loo or a general unusual change in your body), what would be the first thing you would do? What else?

Please select only the first thing you would do in the first column, and then select anything else you might do in the second column.

Random

Base: All respondents: First thing you would do	Public (1018) %	Patient Groups (71) %
Take any action (Net)	98	99
Wait to see if it clears up on its own	6	11
Speak to a friend/family member	11	10
Go online for advice	5	10
Speak to a pharmacist	2	1
Visit my GP	70	61
Go to A&E	1	-
Call NHS24/other helpline	3	-
Other	1	6
Nothing	2	1

Base: All respondents: Total mentions of things you would do	Public (1018) %	Patient Groups (71) %
Take any action (Net)	98	99
Wait to see if it clears up on its own	13	27
Speak to a friend/family member	28	45
Go online for advice	18	42
Speak to a pharmacist	12	11
Visit my GP	88	87
Go to A&E	13	1
Call NHS24/other helpline	21	8
Other	2	8
Nothing	2	1

Q006: GPWAIT: Single coded

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How long would you wait before you visited your GP?

Please select one answer only

Normal

Base: All respondents: Total mentions of things you would do	Public (1018) %	Patient Groups (71) %
Three weeks or less (Net)	85	85
A few days	45	31
A week or two	33	44
Three weeks	6	10
Longer than three weeks (Net)	11	10
A month	5	7
A few months	3	3
Longer than a few months	2	-
Don't know	4	6

Q007: TESTWAIT2: single coded

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If your GP felt it was unlikely that there was anything serious wrong, but still wanted you to have some tests at the hospital, to investigate your concern further, how long would you expect to wait before this happened?

Please select one answer only

Normal

Base: All respondents	Public (1018) %	Patient Groups (71) %
Within a week (Net)	37	14
Same day	9	-
A few days	14	7
A week	14	7
Longer than a week but within a month (Net)	41	55
One to two weeks	18	14
Three to four weeks	13	25
Around a month	9	15
Longer than a month	11	7
It depends on the severity of my symptoms / condition	7	24
Don't know	4	-

Q008: TESTWAIT: Single coded

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If your GP wanted you to have some tests at the hospital, as it might be something serious, how long would you expect to wait before this happened?

Please select one answer only

Normal

Base: All respondents	Public (1018) %	Patient Groups (71) %
Within a week (Net)	62	49
Same day	19	7
A few days	26	23
A week	18	20
Longer than a week but within a month (Net)	28	42
One to two weeks	16	28
Three to four weeks	8	8
Around a month	4	6
Longer than a month	3	1
It depends on the severity of my symptoms / condition	4	7
Don't know	3	-

Q009: WAITATTITUDES: Matrix

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Here are some things people have said when waiting for the results of tests which have been carried out because cancer is suspected. Please select one answer for each to show the extent to which you agree or disagree.

Please select one answer only for each statement.

Random

Base: All Public (1018) / Patient Groups (71)		Total Agree	Agree strongly	Agree	Agree slightly	Neither agree nor disagree	Disagree slightly	Disagree	Disagree strongly	Total Disagree
It would be good to know I could contact someone at my GP practice if I was worried or concerned about any further changes while waiting for my test results (%)	Public	89	34	47	9	8	*	1	1	2
	Patient Groups	90	45	42	3	4	3	3	-	6
It's better to wait until the results for ALL your tests are available, so the healthcare team is fully informed before talking to you about your diagnosis and treatment options (%)	Public	82	23	46	14	9	5	3	1	9
	Patient Groups	79	18	42	18	1	7	7	6	20
Due to the large number of tests being undertaken every day at the hospital, not everyone's results can be processed on the same day they have the tests. (%)	Public	85	20	53	12	10	1	3	1	5
	Patient Groups	76	20	46	10	6	8	8	1	18
Every case is looked at individually so the length of time you wait will depend on the urgency of your condition, as determined by a team of experienced health professionals. (%)	Public	83	21	49	13	11	2	3	1	7
	Patient Groups	75	18	48	8	3	10	10	3	23
It would be good to have a helpline to call to speak to someone about any worries or concerns – or about what may lie ahead - while you wait for your results (%)	Public	79	27	40	12	13	2	4	1	7
	Patient Groups	75	34	30	11	14	4	7	-	11
Nothing anyone could say or tell me would help reassure me while I've been left to wait for results (%)	Public	53	11	27	14	19	9	14	4	28
	Patient Groups	52	23	21	8	15	6	17	10	32

Q010: CAPI OMNIBUS END OF SELF-COMPLETION: Text

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Thank you, please hand the computer back to the interviewer.

Q011: WAIT TEST STATUS: Single coded

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Generally thinking about waiting for test results, that could lead to a cancer diagnosis, which of the following best applies to you?

Please select one answer only.

Inverted

Base: All respondents	Public (1018) %	Patient Groups (71) %
It could be good to have a little time between having the tests and receiving the results	8	-
I wouldn't want to spend any time waiting for the results	35	42
You simply have to trust the health professionals and assume that, if they think it is something serious, or that could get worse quickly, you'll be prioritised/processed sooner	49	55
Don't know	8	3

Q012: REASONWAITSTATUS: Open

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You said at the previous question that: [INSERT TEXT SELECTED AT Q011]. Why do you say that?

CAPI OMNIBUS: PROBE FULLY AND RECORD VERBATIM. ONLINE: Please write in as much information as possible in the box below

Base: All respondents who stated it would be good to have a little time	Public (68) %	Patient Groups (-) %
Would want (thinking) time/time to adjust	26	-
There is a process to follow/can't rush results	10	-
Would want peace of mind/put my mind at rest	9	-
Would want to know ASAP/immediately	7	-
Would want treatment asap/to start asap	3	-
Nothing	9	-
Others	9	-
Don't know	22	-

Base: All respondents who stated wouldn't want to spend any time	Public (343) %	Patient Groups (30*) %
Would want to know ASAP/immediately	39	63
Would want peace of mind/put my mind at rest	19	37
Would want treatment asap/to start asap	16	7
The sooner (it is tackled) the better	8	10
Previous (family) experience	5	17
No point in delaying/why waste time	4	-
Condition might deteriorate	3	3
There is a process to follow/can't rush results	*	20
Others may need to be seen sooner	*	3
Nothing	5	7
Others	1	3
Don't know	7	-

Base: All who stated you have to trust the health professionals	Public (507) %	Patient Groups (39*) %
Trust the NHS/them	32	26
They are the experts/professionals	24	31
They know best/better	19	3
There is a process to follow/can't rush results	4	13
If serious you would be prioritised	4	36
Previous (family) experience	4	18
Would want to know ASAP/immediately	3	10
Just have to accept it/deal with it/no choice	3	3
Would want treatment asap/to start asap	1	3
Would want peace of mind/put my mind at rest	1	5
The sooner (it is tackled) the better	*	5
Others may need to be seen sooner	2	5
No reason/that's just how I feel	*	5
Nothing	6	-
Others	1	3
Don't know	5	-

*=caution: low base size

Q013: TREATWAITSTATUS: Single coded

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If you were to receive a cancer diagnosis, thinking about starting your treatment, which of the following best applies to you?

Please select one answer only

Inverted

Base: All respondents	Public (1018) %	Patient Groups (71) %
It could be good to have a little time between receiving a diagnosis and starting treatment	6	10
I wouldn't want to spend any time waiting for my treatment once my diagnosis was confirmed	44	61
You simply have to trust the health professionals and assume that you'll receive your treatment in an appropriate time-frame	39	30
Don't know	11	-

Q014: REASONTREATSTATUS: Open

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You said at previous question that: [INSERT TEXT SELECTED AT Q013]. Why do you say that?

CAPI OMNIBUS: PROBE FULLY AND RECORD VERBATIM. ONLINE: Please write in as much information as possible in the box below

Base: All respondents who stated it would be good to have a little time	Public (59) %	Patient Groups (7*) %
Depends how serious it is	2	29
Trust doctors/professionals/they know what they are doing	2	14
Would want to consider other options/think it over	28	43
To help you come to terms with it/prepare you mentally	27	57
Would want to talk/prepare family/friends	7	14
Previous experience/family member had cancer	1	14
Would want treatment (right away)/can start treatment (immediately)	6	-
Sooner (treatment) starts the better	4
Cancer is life threatening/serious	3	-
Nothing	5	-
Other	15	-
Don't know	2	-

*=caution: low base size

Base: All respondents who stated wouldn't want to spend any time	Public (445) %	Patient Groups (43*) %
Would want treatment (right away)/can start treatment (immediately)	31	42
Sooner (treatment) starts the better	25	23
Have a better chance of survival/improve chances/better outcome	17	16
Time is important/don't want to waste time	6	5
To prevent cancer spreading/can get worse (quickly)	5	12
Delaying can make it worse/you could die	3	5
Cancer is life threatening/serious	3	2
Trust doctors/professionals/they know what they are doing	*	5
Doctors/professionals need time to plan/treatment needs to be planned	-	5
Would like to/need to know (right away)	3	2
I don't like waiting/am impatient/wouldn't want to wait	5	7
Waiting would cause stress/worry/is horrible	5	26
Previous experience/family member had cancer	3	23
Nothing	5	-
Other	5	5
Don't know	*	-

Base: All who stated you have to trust the health professionals	Public (383) %	Patient Groups (21*) %
Trust doctors/professionals/they know what they are doing	60	57
Trust the NHS	12	5
Doctors/professionals need time to plan/treatment needs to be planned	1	14
Waiting would cause stress/worry/is horrible	-	5
Previous experience/family member had cancer	5	24
No other option/you have to/that's how it goes	4	5
Cannot be done instantly/other people needing treatment	3	-
Sooner (treatment starts) the better	*	5
Other	7	19
Nothing	9	-
Don't know	1	-

Q015: CANCERHIST: Single coded

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Which of the following statements best describes you?

Please select one answer only.

Inverted

Base: All respondents	Public (1018) %	Patient Groups (71) %
Any experience of cancer	8	73
I have been diagnosed with cancer at some point in my life	8	39
I am currently receiving treatment for cancer	1	34
I have never been diagnosed with cancer	87	23
Prefer not to answer	5	4

Ask only if Q015,1,2

Q016: EXPWAIT: Single coded

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During your experience with cancer, do you feel you received enough information about the time you were expected to wait in between having tests and receiving results?

Please select one answer only.

Inverted

Base: All respondents who have been diagnosed with or a receiving treatment for cancer	Patient Groups (52) %
I received too much information.	-
I received the right amount of information	50
I received some information, but not enough	31
I didn't receive any information	17
Not sure	2

Ask only if Q015,1,2

Q017: EXPWAITTREAT: Single coded

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And do you feel you received enough information about the time you were expected to wait from receiving your diagnosis to starting treatment?

Please select one answer only.

Inverted

Base: All respondents who have been diagnosed with or a receiving treatment for cancer	Patient Groups (52) %
I received too much information.	-
I received the right amount of information	54
I received some information, but not enough	29
I didn't receive any information	15
Not sure	2

Q018: OTHERCOMMS: Open

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Please feel free to expand/leave any comments you have on this subject. What could have been done differently/better in your opinion? (max 300 words).

Base: All respondents	Patient Groups (71) %
Happy/satisfied with my treatment (include all references to hospitals, GPs etc.)	14
Wait is too long/should be much quicker (between diagnosis and treatment)	14
Errors/mistakes were made/I was over-looked/notes were lost	6
Had to persevere to get diagnosis/was not believed	8
Stressful/anxious time (for me/family)	10
More information/explanations required/need to ensure patient understands information	7
Other	17
No further comments	42

Q019: Text

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We also have a few questions for you that will help us analyse the data.

Q020: Gender: Single coded

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Could you please tell me your gender?

Normal

Base: All respondents	Public (1018) %	Patient Groups (71) %
Male	49	31
Female	51	69
Other	-	-
Prefer not to answer	-	-

Q022: Age: Single coded

Base: All respondents	Public (1018) %	Patient Groups (71) %
16-24	14	3
25-34	16	4
35-44	15	7
45-54	18	27
55-64	15	23
65+	22	37
Refused	-	-

Q023: SEG: Single coded

Base: All respondents	Public (1018) %	Patient Groups (71) %
AB	25	48
C1	28	31
C2	19	7
DE	29	8
Do not wish to answer	-	6

Q025: Location: Single coded

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Which of these best describes where in Scotland you live?

Please select one answer only

Normal

Base: All respondents	Public (1018) %	Patient Groups (71) %
North of Scotland (Grampian, Highland, Tayside, Western Isles, Orkney, Shetland)	27	17
West of Scotland (Greater Glasgow & Clyde, Ayrshire & Arran, Lanarkshire, Forth Valley)	46	66
South and East of Scotland (Lothians, Fife, Borders, Dumfries & Galloway)	27	17