The Scottish Cancer Patient Experience Survey asks patients about their experience of cancer care and the support they received, from diagnosis through treatment onto aftercare. The inclusion of open ended questions, using free text comment boxes, enables respondents to provide more personal and reflective detail about their individual cancer care journey, and provides valuable insight into the experiences of cancer patients in Scotland. This is the second survey of cancer patients in Scotland which has offered respondents the option to provide free text comments in addition to the closed questions which are detailed in Scottish Cancer Patient Experience Survey 2018. The free text comments provide valuable insights into the experiences of patients throughout their cancer journey.
In total, 3,315 people (66 per cent of all respondents) left at least one comment in the survey. The total number of comments was 9,320, and there were almost twice as many positive as negative comments (4,176 positive comments compared to 2,285 negative comments). Despite there being a greater number of positive comments, the breadth and detail of negative comments has led to greater discussion of negative themes in this report. In addition, the large volume of data meant that positive and negative comments were analysed separately, but in reality, patients' narratives suggested that experiences tended to be a mix of both.
Analysis of the free text responses highlights various topics which patients had chosen to comment on about different stages of the cancer care journey. Each of the six comment boxes asked about different stages, and there were more positive than negative comments at every stage. Almost a quarter (23%) of all comments were made in comment box 1, which specifically asked respondents about the lead-up to their cancer diagnosis, or the way they had found out that they had cancer, which suggests that this was a particularly important aspect of the cancer care journey. Furthermore, this comment box had the most mixed responses, with an almost equal proportion of positive (32%) and negative (30%) comments, suggesting that experiences at the initial stage of the cancer journey had been highly variable. In contrast, people made substantially more positive (62%) than negative (17%) comments in comment box 4, which specifically asked respondents about the care they had received when they were in hospital for cancer care.
Overall, this analysis suggests that care and support, and information and communication were key issues for patients across the cancer care journey. The comments provided by patients highlight many examples of good care, particularly in relation to hospital in-patient care (comment box 4) and other care and support, including GP and third-sector (comment box 5). Importantly, they also highlight areas for improvement, most notably in relation to how medical staff had communicated their diagnosis to the patient and the lead up to diagnosis (comment box 1), as many patients had experienced difficulty in accessing the system, poor communication and information, and waits and delays.
There are several limitations, as well as strengths, in this analysis. The comments reflect the views of survey respondents who chose to provide further information about their experiences in the free text comments boxes, and therefore cannot be inferred to the wider population of cancer patients. Socio-demographic and clinical characteristics have not been included in the analysis, and are therefore not reflected in the findings. In particular, it should be noted that there is a risk of an inherent bias towards particular groups in free-text responses, including people who are more literate, have English as a first language, and who do not have learning disabilities. Notwithstanding these limitations, the analysis of free text comments provides deeper insight into patients' experiences of cancer care in Scotland and enhances the usability and relevance of the quantitative survey results.