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Chamber and committees

Question reference: S6W-25688

  • Asked by: Finlay Carson, MSP for Galloway and West Dumfries, Scottish Conservative and Unionist Party
  • Date lodged: 22 February 2024
  • Current status: Answered by Neil Gray on 4 March 2024

Question

To ask the Scottish Government what measures are in place to ensure that data for all cancer types, including haematological cancers, is collected in each of Scotland's 14 NHS boards as part of the 2024 Scottish Cancer Patient Experience Survey.


Answer

The Scottish Cancer Patient Experience Survey is designed to collect information on experiences of all cancer types involving an inpatient stay or day case, where it is appropriate to do so. 10% of responses to the 2018 Cancer Patient Experience Survey were from patients with haematological cancers.

To ensure a sufficiently large response to the Scottish Cancer Patient Experience Survey, a census approach was taken. This means that surveys were sent to all eligible patients, rather than just a restricted sample of them. Just under 8,800 people were invited to participate in the 2024 Scottish Cancer Patient Experience Survey.

To maximise the survey response and make the survey as accessible as possible, so that we collect information on the experiences of as many people as possible, the survey can be completed online, on paper or over the phone. A language line is available for those who do not speak English and the online questionnaire contains a number of accessibility features including the ability to change font size, the option to switch to a high-contrast colour scheme and screen-reader compatibility.

The sample was selected from 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 10 October 2022 and the 30 June 2023.

In order to confirm the diagnosis of cancer, and to minimise the risk of sending surveys to patients who did not have cancer, the Scottish Cancer Registry (SMR06) was used to quality assure the survey sample. Individuals who were identified from the hospital records, but did not have a confirmed Scottish Cancer Registry diagnosis were excluded from the sample.

It's critical that we minimise the risk of causing distress to the survey recipients when carrying out the survey. To minimise the risk of distress, some patients are excluded from the survey because the patient may not recognise their diagnosis as cancer or the cancer has complex clinical definitions. These include:

  • Patients whose tumour morphology is defined within the Scottish Cancer Registry (SMR06) as benign, uncertain or in situ.
  • Patients with non-melanoma skin cancers (ICD10 code C44).
  • Patients with rare haematological cancers with complex clinical definitions (ICD10 code of C84).
  • Patients with Carcinoma in situ of breast (ICD10 code of D05).
  • Patients with insulinoma (ICD03 code of 81513).

An analysis of 2024 Cancer Patient Experience Survey results by cancer type will be one of the outputs of the survey.