Scottish Cancer Patient Experience Survey 2018: free-text analysis

1. Executive Summary

1.1 Introduction

The Scottish Cancer Patient Experience Survey is a national postal survey jointly funded by the Scottish Government and Macmillan Cancer Support, and run in partnership with Public Health Scotland (PHS). The survey asks patients about their experience of cancer care and the support they received, from diagnosis through their treatment and aftercare.

Over 5,000 patients who received cancer care in Scotland responded to the 2018 Scottish Cancer Patient Experience Survey (SCPES) 2018^[1]. This report presents the results and analysis of the free-text comments provided in the questionnaire. The survey included six free-text comment boxes relating to different aspects of a patient's cancer journey, from the lead up to diagnosis to their overall experience of their care. Of the 5,001 patients who took part, 3,315 (66 per cent) left at least one free-text comment. In total, 9,320 comments were made by participants.

1.2 Methods

Free-text responses were evaluated using thematic analysis to identify common themes amongst responses. Analysis identified key positive and negative issues highlighted by patients in relation to their experience of cancer care. Neutral, factual and miscellaneous comments were also identified. Responses were then categorised into key themes and sub-themes by assigning comments to codes based on similar topics arising from responses. These codes were then compared across all the data to ensure consistency. 

1.3 Findings

Examining responses to the six comment boxes in the survey showed that overall there were more positive than negative free-text responses. Positive and negative comments were analysed separately and responses grouped into common themes and sub-themes. Despite there being a larger number of positive comments, the length, breadth and detail of negative comments has led to greater discussion of negative themes across responses. 

Positive comments

Analysis of the positive comments resulted in the development of several discrete themes; feeling confident in the system, feeling that individual needs were met, efficient processes and positive comments on structures. 

The most common theme identified within the positive comments was feeling that individual needs were met. Many comments related to examples of good support, positive third sector support, being provided with clear and detailed information and patients being involved in decisions about their treatment. 

Many respondents expressed an overall positive care experience, with the most commonly referenced sub-themes relating to receiving good clinical care, good support, efficient processes and clear information 

Negative comments

Negative comments relating to patients' experiences of cancer care were similarly categorised into four main themes; not feeling confident in the system, not feeling that individual needs were met, and negative experiences of processes and structures. 

More than a third of negative comments related to people not feeling confident in the system. They described particular concern about the difficulties they experienced getting diagnosed and referred for treatment, receiving inadequate aftercare, and having inadequate contact with the appropriate medical professional. 

Not feeling that individual needs were met was also an important concern for respondents. Factors which contributed to this feeling included a lack of information about their treatment, poor communication and a lack of emotional support.  

Neutral Comments

Neutral comments written by participants describing their cancer care experiences were coded into three themes; okay care, patient led peer support and support from family and friends. 

Almost three quarters of all neutral comments referred to support provided by family and friends during diagnosis and throughout treatment and aftercare.