Scottish Cancer Patient Experience Survey 2024: technical report

Fieldwork

The Scottish Government contracted IQVIA to administer the survey following a procurement process. IQVIA has in-depth experience of NHS surveys, and has provided support for other care experience survey work both in Scotland and elsewhere in the UK. Public Health Scotland provided support for the administration of the survey along with Scottish Government statisticians.

Respondents had the option to complete the survey by post, online, via a telephone helpline in a wide range of languages or via text phone. The helpline was also available to help with questions or complaints about the survey.

Mail-out

Survey fieldwork began on 14^th February 2024 with the mailout of the survey invite letter. This mailing consisted of a survey invite letter inviting recipients to complete the survey online and an information leaflet including details of the survey helpline in a range of languages. The letter also informed people that a reminder would be issued in a couple of weeks containing a paper version of the questionnaire.

In total, 8,800 invite letters were sent out. Of the 8,945 people identified in the original sample, 114 died between sample selection and the initial mailout, and a further 31 people were excluded for administrative reasons, such as an incomplete address.

A reminder was sent to those who had not responded to the initial survey pack on the 6^th March 2024. This mailing included 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. Between the invite letter and the first reminder, 78 people were identified as being ineligible due to either having died or for administrative reasons.

A second reminder, containing a survey letter and an information leaftet including details of the survey helpline in a range of languages, was sent to those who had still not responded on 20^th March 2024. Between the first reminder and the second reminder, a further 56 people were removed from the sample due to either having died or administrative reasons.

The survey closed on 30^th April 2024.

Survey Helpline Calls

During the fieldwork, the survey helpline received a total of 298 calls. The most common reason for calling the helpline was to request assistance with completing the survey.

The total number of helpline calls in 2024 (298) is comparable to the number received in 2018 (291), however the number of calls received from individuals advising that they did not want to participate in the survey fell from 164 in 2018 to 70 in 2024, while the number of general enquiries increased from 42 to 159. These changes could be attributed to the changes to the eligibility criteria for the survey and the move to a ‘push-to-online’ model where the initial mailing does not contain a paper questionnaire and survey recipients are initially encouraged to complete the survey online.

The number of calls to advise that the respondent had died increased from 4 in 2018 to 12 in 2024. Although, this is still a low number, the increase is likely explained by the shorter time between hospital admission and survey sampling. This may have resulted in a higher number of people with less survivable cancers being included in the sample.

Due to differences in the way that helpline calls were categorised compared to previous rounds, care should be taken when comparing the number of general enquiries and calls for help to complete the survey with previous rounds of the survey (Table 1).

People who recently died

In any survey, there is a risk of sampling and sending survey material to people who have recently died. This can cause distress to the family members of the person who has died and every effort is made to minimise the risk of this occurring.

For this survey, the survey recipient’s address was obtained from the Community Health Index (CHI) database, which is a source generally up to date with regard to death events. Nevertheless, any death which occurs in Scotland must be registered within eight days of the date of death. This means that there can be a delay between the actual date of death and the date that it is registered and updated on the CHI and National Records of Scotland databases.

In order to address this gap, a specialised team at National Records of Scotland (NRS) run multiple death checks of the people sampled, one after the sample is drafted, and one prior to each mail out.

Notifications of death were sent to Public Health Scotland on each of the three mail out days. Public Health Scotland subsequently passed this information on to the survey contractor, who removed survey packs as required prior to mail out.

Having access to information about recent deaths minimises the number of questionnaires being sent to addresses of people who had died.

The people included in the 2024 survey were identified using an extract taken from a national dataset containing records of acute hospital activity (SMR01) by Public Health Scotland analysts on 8th January 2024. Following eligibillity checks against the Scottish Cancer Registry and the CHI database, the initial survey cohort was established on the 18^th January. The questionnaire printing and mail-out process extended from this date through to the final mailing date of the 20^th March 2024. This meant that some people would have died between the date the sample was extracted and the dates the survey packs were mailed out.

As with all Care Experience Programme surveys, every possible effort was made by the survey contractor, Public Health Scotland and the Scottish Government to avoid letters being sent to family members of people who had died. Therefore, in the same way to previous surveys, a list of people included in the initial sample was sent to NHS Central Register (NHSCR) and linked to the National Records of Scotland deaths database register to identify people who had recently died and remove them from the sample.

The list of people sampled for the survey was shared with the Community Health Index Linkage and Indexing (CHILI) team in PHS (who host the CHI database) for further death checks.

A total of 114 people were identified as deceased by NHSCR and CHILI checks and removed from the sample prior to and on the initial mail-out day of the survey on the 14^th February 2024. These individuals were not sent survey packs. In addition, 31 people were identified through these checks as no longer eligible for the survey.

NHSCR and CHILI checks identified 78 people as deceased or no longer eligible prior to the first reminder mail out (6^th March 2024). NHSCR and CHILI checks identified 56 people as deceased or no longer eligible prior to the second and final reminder mail out (20^th March 2024). All of these records were removed prior to mailing survey packs to people. We are grateful to NHSCR and CHILI team for their help and support during this stage of the project.

In 12 cases, we were notified that a questionnaire was sent to someone who had died. In the majority of these cases, the death occurred very close to the mail-out dates and the death notification was received after the letters had been mailed out. Of those 12 cases, there were 4 cases where this was reported to the helpline by the family after the last mailout day. These deaths were not picked up in the NHSCR/CHILI checks, however, these cases were removed from the sample during analysis.