Scottish Cancer Patient Experience Survey 2018: technical report
Technical report for the 2018 Scottish Cancer Patient Experience Survey.
2. Survey Development
The survey questionnaire for the 2015 SCPES was largely based on the Cancer Patient Experience Survey run in England. The content of the questionnaire was reviewed and updated ahead of the 2018 survey to ensure continued relevance of survey questions and to incorporate wider changes to health policy, such as the introduction of questions around person-centred behaviours. Details of the changes made to the questionnaire are detailed in Tables 1 to 3.
The survey materials were also revised ahead of the 2018 survey to improve engagement with respondents and to ensure compliance with General Data Protection Regulations in line with changes made to other surveys in the programme. This included improving the information provided to survey recipients in the covering letter and also introducing a privacy notice for the survey. The survey packs consisted of the following:
- Initial Mailout: A survey letter, a paper questionnaire, a freepost return envelope and an information leaflet including details of the survey helpline in a range of languages.
- First Reminder: A survey letter and an information leaflet including details of the survey helpline in a range of languages.
- Second Reminder: A survey letter, a paper questionnaire, a freepost return envelope and an information leaflet including details of the survey helpline in a range of languages.
Copies of all of the survey materials, including the privacy notice, can be found at www.gov.scot/CancerSurvey.
Table 1: New questions for the 2018 survey
| Quest. No. |
Topic |
Question Text |
Reason |
|---|---|---|---|
| 13 |
Deciding treatment |
Were you involved in discussions with healthcare professionals about the right treatment options for you? This may have included the option of not treating your cancer. |
To gather data on experiences of person-centred care behaviours[2]. |
| 22 |
Operations, Radio and Chemo |
Were you given clear written information about what you should or should not do after the operation? |
Replaced 2015 Q39 as it was felt that it was more relevant following an operation than after hospital treatment which may be a regular appointment. |
| 29a |
Hospital care |
They spent enough time with me |
To gather data on experiences of person-centred care behaviours[2]. Consistent with questions used in other Patient Experience surveys. |
| 29b |
Hospital care |
They listened to me if I had any questions or concerns |
To gather data on experiences of person-centred care behaviours[2]. Consistent with questions used in other Patient Experience surveys. |
| 29c |
Hospital care |
They discussed my condition and treatment with me in a way I could understand |
To gather data on experiences of person-centred care behaviours[2]. Consistent with questions used in other Patient Experience surveys. |
| 29d |
Hospital care |
They gave me the opportunity to involve the people that matter to me |
To gather data on experiences of person-centred care behaviours[2]. Consistent with questions used in other Patient Experience surveys. |
| 29e |
Hospital care |
They helped me to feel in control of my treatment / care |
To gather data on experiences of person-centred care behaviours[2]. Consistent with questions used in other Patient Experience surveys. |
| 45 |
Other support |
Do you feel you have been supported emotionally and psychologically by healthcare professionals during your cancer treatment? |
To gauge level of emotional / psychological support provided by healthcare professionals during cancer treatment. |
| 46 |
Other support |
During your cancer treatment, have you been given information or support from third sector organisations, such as charities or voluntary / community groups? |
To understand level of information / support provision by third sector during cancer treatment and to assess if it has been useful. |
| 47 |
Other support |
Do you feel you have been supported emotionally and psychologically by third sector organisations during your cancer treatment? |
To gauge level of emotional / psychological support provided by third sector during cancer treatment. |
| 48 |
Other support |
Once your cancer treatment finished were you given information or support from third sector organisations? |
To understand level of information / support provision by third sector after cancer treatment and to assess if it has been useful. |
| 51 |
Overall experience |
Have you been given a written note of the treatments you have received to treat your cancer? |
To gauge prevalence of treatment summaries. |
| 52 |
Overall experience |
Overall, how easy did you find it to travel to appointments relating to your cancer care? |
To understand prevalence of difficulty with travelling to appointments and how this is dispersed across respondent groups. |
| 53 |
Overall experience |
Which of the following difficulties did you experience when travelling to appointments relating to your cancer care? Please tick all that apply. |
To understand what difficulties relating to travel are most common and how these are dispersed across the country. |
| 54 |
Overall experience |
Were you able to bring a family member, friend or someone else to your appointments to support you when you wanted to? |
To understand whether difficulties with travel impact on people’s ability to bring someone for support. |
| 55 |
Overall experience |
Overall, how would you rate the communication around how long appointments relating to your cancer care would take? |
Replaced 2015 Q62 to get more useable data on communication of length of appointments. |
| 56 |
Overall experience |
Overall, do you feel that you have been treated with dignity and respect by the healthcare professionals treating you for cancer? |
Replaced 2015 Q38 to reflect that individuals should be treated with dignity and respect throughout their cancer care, not just in hospital. |
Table 2: Questions that were changed in the 2018 survey
| 2015 Q. No. |
2018 Q. No. |
Topic |
Question Text |
Reason |
|---|---|---|---|---|
| 1 |
1 |
Getting diagnosed |
Before you were told you needed to go to hospital about cancer, how many times did you see a healthcare professional at your GP practice about the health problem caused by cancer? |
Routing has been introduced to ensure those who went straight to hospital are not asked further questions about experiences of primary care diagnosis routes. Data on screened diagnosis routes can be linked to from SMR06. |
| 3 |
2 |
Getting diagnosed |
How long was it from the time you first thought something might be wrong with you until you first contacted a healthcare professional at your GP Practice? |
Will only be answered by those with a primary care diagnosis route. Question broadened to healthcare professional, rather than doctor specifically. |
| 2 |
3 |
Getting diagnosed |
How do you feel about the length of time you had to wait before your first appointment with a hospital doctor? |
Will only be answered by those with a primary care diagnosis route. |
| 5 |
4 |
Getting diagnosed |
Think about the first time you had a diagnostic test for cancer. Knowing what you know now, did you have all the information you needed about your test beforehand? |
Focus changed to first diagnostic test, rather than last as felt that this improved question flow. Question text rephrased to emphasise reflective nature of question. Additional response option included and “tick all” instruction removed. |
| 7 |
5 |
Getting diagnosed |
Were the results of your first diagnostic test explained in a way you could understand? |
Focus changed to first diagnostic test, rather than last as felt that this improved question flow. |
| 25 |
20 |
Operations, Radio & Chemo |
Think about the last time you went into hospital for an operation for your cancer. Knowing what you know now, did you have all the information you needed about your operation beforehand? |
Question text rephrased to emphasise reflective nature of question. Additional response option included and “tick all” instruction removed. |
| 46 & 49 |
24 |
Operations, Radio & Chemo |
Have you had radiotherapy treatment? |
Response options modified to allow two 2015 questions to be asked as one to save space. |
| 50 & 53 |
26 |
Operations, Radio & Chemo |
Have you had chemotherapy treatment? |
Response options modified to allow two 2015 questions to be asked as one to save space. |
| - |
- |
Hospital care |
Section as a whole |
Amended to ask about last hospital experience with no distinction between inpatient and outpatient. |
| 29 |
29f |
Hospital care |
They talked in front of me as if I wasn’t there |
Response options changed to allow question to be incorporated into tabular format. Broadened to healthcare professionals. |
| 34 |
30 |
Hospital care |
The last time you received hospital treatment for your cancer, did the healthcare professionals caring for you call you by your preferred name? |
Focus of question changed to whether name was used as may be familiar with staff and so might not ask preferred name each time but should still use it. Broadened to healthcare professionals. |
| 21 to 23 |
41 to 43 |
Other support |
Questions on support and information provided by healthcare professionals |
Broadened to healthcare professionals, was previously asked about hospital staff but some of this information may have come from other healthcare professionals, such as GP Practice. |
| 54 |
44 |
Other support |
Did healthcare professionals give your family or someone else close to you all the information they needed to help care for you at home? |
Broadened to healthcare professionals and response options simplified to group all “not relevant to me” type responses into one. |
| 60 |
50 |
Overall experience |
Have you been given a care plan? |
The explanation of care plan that is provided has been expanded to make it clearer for respondents. |
| 69 to 73 |
62 to 66 |
About You |
Demographic questions |
Question and response options made consistent with other Scottish Patient Experience surveys. |
Table 3: Questions that were removed for the 2018 survey
| 2015 Q. No. |
Topic |
Question Text |
Reason |
|---|---|---|---|
| 4 |
Getting diagnosed |
Have you had a diagnostic test for cancer? |
Not required – all respondents have a confirmed cancer diagnosis (as per SMR06) and so must have had a diagnostic test. |
| 6 |
Getting diagnosed |
Overall, how did you feel about the length of time you had to wait for your test to be done? |
Data has limited use, removed in order to prioritise questions which focus on experience of person-centred behaviours throughout the cancer care journey. |
| 28 |
Hospital care |
Have you had an operation or stayed overnight for cancer care? |
As inpatient and outpatient sections have now been grouped, this question is no longer required. |
| 30 & 32 |
Hospital care |
Did you have confidence and trust in the doctors / ward nurses treating you? |
Positive experiences of person-centred behaviours are generally correlated to confidence and trust. Question has been removed in favour of questions on specific person-centred behaviours. |
| 31 |
Hospital care |
If your family or someone else close to you wanted to talk to a doctor, were they able to? |
Limited accuracy of data as not a direct experience for the respondent, would be from a second-hand perspective. |
| 33 |
Hospital care |
In your opinion, were there enough nurses on duty to care for you in hospital? |
Question has been removed in favour of questions on experience of care via specific person-centred behaviours, particularly Q29. |
| 36 & 43 |
Hospital care |
Did you find someone on the hospital staff to talk to about your worries and fears? |
Replaced by Q29b |
| 37 |
Hospital care |
Do you think the hospital staff did everything they could to help control your pain? |
Question has been removed in favour of questions on experience of care via specific person-centred behaviours. In particular, Q29b, c & e which should incorporate this. |
| 38 |
Hospital care |
Overall, did you feel you were treated with respect and dignity while you were in hospital? |
Replaced by Q56 as should experience this throughout cancer journey, not just in hospital. |
| 39 |
Hospital care |
Were you given clear written information about what you should or should not do after leaving hospital? |
Replaced by Q22 as more relevant post operations. Some respondents will be thinking of more regular hospital appointments where this may not apply. |
| 42 |
Hospital care |
Have you been treated as an outpatient or day case for cancer care? |
As inpatient and outpatient sections have now been grouped, this question is no longer required. |
| 44 |
Hospital care |
The last time you had an outpatients appointment with a cancer doctor, did they have the right documents? |
Individuals may not know. Removed in favour of questions on person-centred behaviours. |
| 48 & 52 |
Radio & Chemo |
Once you started your treatment, were you given enough information about whether your radiotherapy / chemotherapy was working in a way you could understand? |
Removed as clinical advisors noted that it is unlikely information of this type would be provided due to the uncertain nature of the treatments and how they work. |
| 57 |
Support from health & social services |
As far as you know, was your GP given enough information about your condition and the treatment you had at the hospital? |
Individuals may not know. Removed in favour of questions on person-centred behaviours. |
| 62 |
Overall experience |
Overall, how do you feel about the length of time you had to wait when attending clinics and appointments for your cancer treatment? |
Data has limited use, removed in order to prioritise questions which focus on experience of person-centred behaviours throughout the cancer care journey. |
| 65 to 67 |
About you |
Questions on respondents cancer and how they are at time of responding. |
Data on individuals’ cancer can be linked to using SMR06 data. This will allow us to do any additional analysis required using stage or grade of cancer. |
| 68 |
About you |
What was your age on your last birthday? |
Age of respondent now being taken from administrative records (see Section 8 for more information). |
| 74 to 76 |
About you |
Questions on permission to use contact details / link survey data in future. |
These questions were removed as part of the information governance review of this survey. Information about how data will be used was provided to respondents in a privacy notice. |
Contact
Email: euan.smith@gov.scot
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