Scottish Cancer Patient Experience Survey 2024: technical report

Survey Design

The survey design for the 2024 SCPES was based on the 2018 survey. Improvements in the systems used to draw the sample meant that there was a shorter time period between hospital admission and receiving a survey pack, more up to date address information and more timely notifications of deaths. Small changes were made to the survey cohort selection criteria in response to feedback received on the 2018 survey and following a review of the cancer types to be included in the survey. Using the same sampling methodology between surveys ensures a consistent approach and allows for robust comparisons over time.

The sampling was carried out by PHS using the statistical software package R and was designed to:

• provide results at national, Regional Cancer Network, NHS Board and Cancer Centre levels;
• provide feedback relating to recent experiences;
• include people who had experienced the range of cancer care services; and
• minimise the chances of sending the survey to individuals who did not have cancer or who had died since leaving hospital.

PHS used a national dataset containing records of acute hospital activity (SMR01) to identify people aged 16 or over with an inpatient or day case record with any mention of cancer and a discharge date between 1^st October 2022 and 30^th June 2023.

Where a person had more than one hospital record meeting the above criteria, the most recent hospital episode was selected. This ensured that each person only appeared in the sample once.

In order to confirm the diagnosis of cancer, and to minimise the risk of sending surveys to patients who did not have cancer, the sample was validated using the Scottish Cancer Registry. Individuals who were identified from the hospital records but did not have a confirmed Scottish Cancer Registry diagnosis date between 1^st April 2022 and 31^st December 2022 were excluded from the sample.

The types of cancer to be included in the survey were reviewed and advice on which groups should be included in the survey was sought from the PHS Cancer Team. In the 2015 CPES, patients with an ICD10 code of D05 (carcinoma in situ of breast) were included in the survey cohort. They were not included in the 2018 or the 2024 survey cohort.

In response to feedback received during the 2018 survey, patients whose tumour morphology is defined within the Scottish Cancer registry as benign, uncertain or in situ were excluded from the 2024 survey, as were patients with insulinomas (ICD10 code C25; ICD03 code 81513). This was due to the variation in the clinical definition of these types of tumours, difficulties in identifying malignant tumours and the language used by clinicians to describe some of these cancer types. Excluding these cancer types from the survey cohort would lessen the likelihood of selecting patients who may not recognise their diagnosis as cancer and thereby minimise the chance of causing distress to survey recipients.

The following patients were excluded from the sample:

• Patients who do not have a confirmed diagnosis of cancer according to SMR06.
• Patients with an ICD10 code of C44 (other malignant neoplasms of skin) and all other C44 classifications (C44.0 to C44.9).
• Patients with an ICD10 code of C84 (some haematology codes) and all other C84 classifications (C84.0 to C84.9).
• Patients with an ICD10 code of C25 and ICD03 code of 81513 (insulinoma). Identified using SMR06.
• Patients with non-malignant morphology. Identified using SMR06.
• Stays with an ICD10 code of D05 (carcinoma in situ of breast) and all other D05 classifications (D05.0 to D05.9) as the main diagnosis.
• Patients aged 15 years or less (on discharge).
• Patients treated in a hospice.
• Patients known to be deceased.
• Privately funded stays in an NHS or private hospital.

The following inpatient or day case admissions were excluded from the sample:

• Stays in a private hospital / hospice.
• Stays for Scottish NHS patients treated in hospitals outside of Scotland, but whose care was commissioned by a NHS board.
• Stays for patients who were not resident in Scotland at the time of the episode. This includes Northumberland residents treated in NHS Borders and patients where it is unknown whether they were resident in Scotland or not.
• Stays for termination of pregnancy and/or other conditions relating to pregnancy and childbirth.
• Stays in a hospital maternity unit.
• Stays in a long-stay hospital.
• Stays for a mental health condition in a hospital for mental illness.
• Stays in a learning disabilities unit.

Addresses were obtained from the CHI database and checked to ensure that they were complete. Any records where the address was incomplete were removed from the sample.

To ensure a sufficiently large response to the survey, a census approach was taken. This means that surveys were sent to all qualifying patients, rather than just a restricted sample of them. A total of 8,945 people were identified for inclusion in SCPES 2024.

Access to Individuals’ Names & Addresses

Approval was given by the Public Benefit and Privacy Panel (PBPP) to use NHS data to identify a survey sample and approach individuals. A copy of the approval letter is available in the supporting documents for the survey.

Data containing individuals’ names and addresses were transferred securely and were limited to variables required to mail the survey pack to the individual and identify which hospital their sample record related to. All data was accessed, managed and stored in accordance with the data confidentiality protocols described in the privacy notice for the survey.