Scottish Cancer Patient Experience Survey 2015/16: Analysis of Free-text Comments

Introduction

Patient experience is recognised as a key marker of the quality of health care and is central to the Scottish Government's Quality Strategy. Understanding the experiences of people with cancer is increasingly important as cancer care and its treatment become more complex and the number of people living with and beyond cancer rises year on year (Maddams, Utley, Møller, 2012).

This is the first time a Cancer Patient Experience Survey has been conducted in Scotland. Measuring patients' experiences of their diagnosis, care and treatment is vital if we are to drive improvements in cancer services across the Nation. The data gathered from the Scottish Cancer Patient Experience Survey will also help NHS Boards, Cancer Centres and Cancer Networks to understand the needs and priorities of patients within their own areas, as well as to compare against all Scotland results and those of other UK countries in so far as the methods used are comparable.

The quantitative results of the NHS Scotland Cancer Patient Experience Survey highlight that the majority of patients have a positive experience of care overall, and that many aspects of care provision are working well. The results also draw attention to particular areas of care which are less positive and require service improvement. However, the data generated from structured questions - the questions limited to multiple choice options - within the survey can only provide an overview of the issues that matter most to patients undergoing cancer treatment and care. It is increasingly recognised that data from free-text comments provides deeper and more detailed insights into patients' experiences, and that rigorous analysis of a large number of free-text comments can reveal aspects of care that are particularly important as well as those which affect people with specific needs and circumstances.

During the development phase of the Scottish Cancer Patient Experience Survey, the Steering Group endorsed the value of patients' own words to describe their experiences of care and made a decision to increase the number of free-text boxes that had been provided in surveys conducted in England, Wales and Northern Ireland, from three to seven. Rather than just ask patients what was good about their care, what could be improved, and whether they had any other comments to make, we chose to offer a free-text box at the end of each section of the questionnaire. By doing this, we hoped that patients would feel able to comment about particular stages of their cancer diagnosis, treatment and care, so that we could learn lessons for service improvement that were truly based on patients' own experiences.