Scottish Cancer Patient Experience Survey 2015/16

Introduction

The Scottish Cancer Patient Experience Survey is a postal survey conducted in partnership by the Scottish Government and Macmillan Cancer Support. This is the first time the survey has been run in Scotland.

The survey was sent to cancer patients aged 16 or over that had an inpatient stay or hospital visit as a day case between January and September 2014 as well as a cancer diagnosis between July 2013 and March 2014.

The survey questionnaire is based on the questionnaire used for equivalent English Cancer Patient Experience Survey and covers:

• Referral to hospital by GP
• Diagnosis
• Decisions about treatment
• Role of the Clinical Nurse Specialist
• Support for people with cancer
• Hospital doctors and ward nurses
• Hospital care and treatment (including inpatient stays, day case or outpatient visits, and operations)
• Radiotherapy and Chemotherapy
• Home care and support
• Care from general practice
• Overall NHS care

The survey was carried out with the assistance of Information Services Division ( ISD), part of NHS National Services Scotland, whose role included advising on survey methodology, sampling patients, producing national and local analysis and producing local level reports.

The administration of the survey fieldwork was undertaken by an approved survey contractor Quality Health Ltd.

This report presents the national findings from the survey. Detailed findings for individual Cancer Networks, NHS Boards, and Cancer Centres are available at: www.gov.scot/cancersurvey

The Scottish Care Experience Programme

The Scottish Cancer Patient Experience Survey forms part of the Scottish Care Experience Survey Programme.

The Care Experience Surveys aim to provide local and national information on the quality of health and care services from the perspective of those using them. They allow local health and care providers to compare with other areas of Scotland and to track progress in improving the experiences of people.

The other regular national care experience surveys are:

Inpatient Experience Survey

Health and Care Experience Survey

Maternity Care Experience Survey

A one-off Radiotherapy Survey was also completed in 2014.

The survey programme supports the three quality ambitions of the 'Healthcare Quality Strategy for NHSScotland' (or Quality Strategy) ^[1] - Safe, Effective, Person-centred by providing a basis for the measurement of quality as experienced by service users across Scotland. In particular the surveys support the person-centred quality ambition which is focused on:

• Putting people at the centre of care,
• Ensuring that care that is responsive to individual personal preferences, needs and values,
• Assuring that individual values guide all care decisions.

Aims of the Cancer Patient Experience Survey

The survey's aims are to:

• Provide comparative feedback to Regional Cancer Networks, Cancer Centres and NHS Boards that will be used to highlight areas of best practice, and to indicate where improvement work might need to be considered.
• Explore if there are differences in experience of treatment between groups of cancer patients (for example different cancer types and level of deprivation).
• Allow assessment of change in cancer care experience over time.

With respondent consent and the necessary approvals, results from the survey can in future be linked to data from other health and social care datasets by NHS Scotland statisticians. This would provide further insight into patients' experience of their care and treatments and link these to outcomes.

Survey design

Sample

The sampling for the survey was carried out by ISD.

Direct sampling from the Scottish Cancer Registry ( SMR6 ^[2] ) is not permitted for a postal survey of this sort. Therefore, the primary sampling frame was a national dataset containing records of acute hospital activity ( SMR01 ^[3] ). This was used to identify adults (aged 16 years and over) with an inpatient or day case record with any mention of cancer during the period between 1 ^st January 2014 and 30 ^th September 2014.

In order to confirm the diagnosis of cancer and to minimise the risk of sending surveys to patients who did not have cancer, validation was completed using the Scottish Cancer Registry. The sample identified from the hospital records was checked to identify patients who had a Cancer Registry diagnosis date between 1 ^st July 2013 and 31 ^st March 2014 and who were alive at 31 ^st July 2015. Patients sampled from SMR01 but not present in SMR6 were excluded from the sample.

The survey was sent to all patients successfully identified through the process above.

ISD also co-ordinated regular death checking against National Health Service Central Register ( NHSCR) and English NHS Health & Social Care Information Centre ( NHS HSCIC) records to reduce the risk of sending survey packs to deceased patients.

Questionnaire

The questionnaire (contained in Annex A) was developed and reviewed by a steering group comprising representatives from NHS Boards, ISD, the third sector, cancer patients and the Scottish Government.

The survey questionnaire is based on the most recent version of the questionnaire used in the equivalent English survey. The English questionnaire was revised for their survey this year and was very kindly shared with the steering group whilst under development.

Questions were added to the Scottish questionnaire to confirm the hospital in which the respondents' care took place. Additionally, freetext comment boxes were introduced throughout the questionnaire relating to specific sections of questions. This is in contrast to the typical approach of asking for general comments at the end of the questionnaire.

Survey fieldwork and response

Fieldwork was undertaken by Quality Health Ltd, an approved survey contractor on behalf of the Scottish Government and Macmillan Cancer Support between 7 ^th October 2015 and 22 ^nd January 2016.

In total, 7,949 valid survey packs were sent to patients and 4,835 were returned, giving an overall response rate of 61%.

Age and gender of respondents

Survey respondents were asked to provide demographic information. Of the patients that answered these questions:

• 43 per cent were male and 57 per cent were female
• 2 per cent were aged 16-34, 17 per cent were aged 35-54, 60 per cent were aged 55-74 and 22 per cent were aged 75 or over.

Tumour group of respondents

The number of survey responses from each tumour group is as below.

Table 1: Number of survey responses from each tumour group

Tumour group	Number of respondents
Brain / central nervous system	39
Breast	1187
Colorectal / lower gastrointestinal	721
Gynaecological	359
Haematological	379
Head and neck	264
Lung	292
Prostate	592
Sarcoma	34
Skin	129
Upper gastrointestinal	189
Urological	308
Other	13
Tumour group unknown	329
Total	4,835

Data analysis and interpretation

The survey data were collected by the contractor Quality Health Ltd. A pseudonymised dataset containing the survey responses was then securely transferred to ISD who carried out the analysis at a national and local level and produced reports at Cancer Network, NHS Board and Cancer Centre level.

When interpreting the results in this report please note that:

• Results in this publication and in the local reports have not been weighted.
• Unless stated, percentages in this report are calculated excluding any patients from the denominator who did not answer the question or answered "not relevant", "don't know", or similar.
• Differences between tumour groups and the national average are only highlighted and discussed if they are statistically significant (see Annex B for details of significance testing used).
• Where there are fewer than 20 responses to a particular question from a tumour group, that tumour group has not been presented in the relevant chart
• Where analysis has been done to compare the percentage of patients responding positively, the guide in Annex C has been used to class responses as positive and negative for each question.

Results for tumour type and for level of deprivation

This report contains discussion of results for different tumour groups and differing levels of deprivation. Spreadsheets with these results breakdowns are available at: www.gov.scot/cancersurvey

Results for Regional Cancer Networks, NHS Boards, and Cancer Centres

Reports have been produced for individual regional cancer networks, NHS Boards and Cancer Centres. These are also available at: www.gov.scot/cancersurvey

Analysis of survey comments

In July this year, analysis of the freetext survey comments will be published at: www.gov.scot/cancersurvey

Cancer Patient Experience Surveys in other parts of the UK

Cancer Patient Experience Surveys have previously been carried out in England, Northern Ireland, and Wales. Further information is available below:

England: https://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey

Northern Ireland: https://www.quality-health.co.uk/surveys/northern-ireland-cancer-patient-experience-survey

Wales: https://www.quality-health.co.uk/surveys/welsh-cancer-patient-experience-survey