Scottish Cancer Patient Experience Survey 2018: technical report

4. Fieldwork

The Scottish Government contracted Quality Health Ltd to administer the survey.  Quality Health Ltd 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. ISD provided support for the administration of the survey.

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 handle questions or complaints about the survey.

Mail-outs

The fieldwork began on 19 September 2018 with the mailout of the initial survey packs. A first reminder was sent to those who had not responded to the initial survey pack on 10 October 2018, and a second reminder was sent to those who had still not responded on 7 November 2018. The survey closed on 19 December 2018.

Survey Helpline Calls

During the fieldwork, the survey helpline received a total of 291 calls. The most common reason for calling the helpline was individuals advising that they did not want to complete the survey or receive any further survey letters (Table 4). 

A small number of those sampled (0.3 per cent) contacted the survey helpline to query their eligibility for the survey. Of those that contacted the helpline to query their eligibility, seven individuals wanted their call escalated, that is they wanted a follow-up call from their NHS Board regarding their query. The remaining 20 individuals did not wish to escalate their call, that is they did not wish to pursue the matter any further. Details for all individuals who called regarding their eligibility in relation to their cancer diagnosis were double-checked against the Scottish Cancer Registry.

Table 4: Number of calls to the survey helpline, by main reason for the call

The number of calls to the helpline by main reason for call is broadly consistent with those from 2015. Most notably: 

• there were more telephone completions in 2018 – this is likely due to the changes to the mailout methodology that were implemented for the 2018 survey; and
• there were fewer calls to query eligibility in 2018 – this may be related to the exclusion of ‘breast in situ’ tumours from the 2018 sample as this group made up a large proportion of these calls for the 2015 survey.

People who were recently deceased

Individuals included in the 2018 survey were sampled on 1 August 2018. The sampling, questionnaire printing and mail-out process extended from this date through to the final mailing date of 7 November 2018. This meant that some people would have died between the extract date and mail out dates. As with all Care Experience surveys, every possible effort was made to avoid questionnaires being sent to family members of people who had died. 

A list of people included in the initial sample was checked against the National Records of Scotland death register to identify people who had recently died so they could be removed from the sample. The list of people sampled for the survey was also shared with Atos Origin Alliance (who host the CHI database) and the NHS Central Register (NHS CR). This allowed Atos and NHS CR to check for people who had died and send notifications to ISD throughout the mail-out period.  ISD subsequently passed this information on to Quality Health Ltd, who removed survey packs as required prior to each mailout.  

Having access to information about recent deaths greatly reduced the number of questionnaires being sent to addresses of people who had died. Between the CHI and NHS CR databases, a total of 152 records included in the initial sample were flagged as deceased between the time the sample was finalised and the final mail out.  All of these deceased records were removed prior to mailing questionnaires to people. We are grateful to NHS CR and Atos Origin Alliance for their help and support during this stage of the project.

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 NHS CR databases. This delay can mean it is extremely difficult to prevent any questionnaires being sent to addresses of people who have died. In four cases a questionnaire was sent to someone who had died shortly after the death checks had been made and the person’s family contacted Quality Health Ltd to notify them of this. However, as outlined above, efforts were made to avoid this as much as possible.