Insights into the experiences of patients with cancer in London: framework analysis of free-text data from the National Cancer Patient Experience Survey 2012/2013 from the two London Integrated Cancer Systems

Abstract

ObjectiveTo shed light on experiences of patients with cancer in London National Health Service (NHS) trusts that may not be fully captured in national survey data, to inform improvement action plans by these trusts.DesignFramework analysis of free-text data from 2012/2013 National Cancer Patient Experience Survey (NCPES) from the 2 London Integrated Cancer Systems.Setting and participantsPatients with a cancer diagnosis treated by the NHS across 27 trusts in London.Main outcome measuresFree-text data received from patients categorised into what patients found good about their cancer care and what could be improved.MethodsUsing Framework analysis, a thematic framework was created for 15 403 comments from over 6500 patients. Themes were identified across the London data set, by tumour group and by trust.ResultsTwo-thirds of free-text comments from patients in London were positive and one-third of those related to the good quality of care those patients received. However, the majority of comments for improvement related to quality of care, with a focus on poor care, poor communication and waiting times in outpatient departments. Additionally, 577 patients (9% of those who returned free-text data in London) commented on issues pertaining to the questionnaire itself. Some patients who experienced care from multiple trusts were unclear on how to complete the questionnaire for the single trust whose care they were asked to comment on, others said the questions did not fit their experiences.ConclusionsNCPES free-text analysis can shed light on the experiences of patients that closed questions might not reveal. It further indicates that there are issues with the survey itself, in terms of ambiguities in the questionnaire and difficulties in identifying patients within specific trusts. Both of these issues have the potential to contribute to knowledge and understanding of the uses and limitations of free-text data in improving cancer services.

Joining the dots: Can UW‐QoL free‐text data assist in understanding individual treatment experiences and QoL outcomes in head and neck cancer?

“…It offers a method to address a limitation in the ability of structured measures to capture diversity in patient needs, and also the lack of generalizability that frequently limits interview‐based qualitative research. Patient reported text data has been used to complement quantitative scored responses to inform cancer services quality and improvement . However, it is important to identify and address potential administrative and clinician‐related barriers to routine HRQoL data collection if this software is to enhance HRQoL data collection in the local context.…”

Automated analysis of free-text comments and dashboard representations in patient experience surveys: a multimethod co-design study

“…7 Even when analyses are undertaken, as with the 2013 London CPES free-text comments, there is a significant time lag; the London data were released in June 2013, the analysis was completed in December 2014 and was then published in June 2015. 14 There are several problems with such delays. First, the services the comments relate to may have changed considerably and most comments may no longer be relevant.…”

“…Despite the limitations of manual thematic analysis, there have been few previous attempts to analyse large-survey, unstructured, free-text responses in health care, including cancer services, to inform clinical and health-care practice. 7,12,15,18,19 There are notable exceptions, 14,[18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34] but these all represent one-off analyses (see Chapter 2).…”

“…Wiseman et al 14 undertook a framework analysis of free-text data from the 2012-13 National CPES subsample for two London Integrated Cancer Systems, covering 27 trusts. This comprised 15,403 comments from > 6500 patients.…”

Determination of Key Drivers of Patient Experience in a Midsize Pediatric Hematology-Oncology Ambulatory Clinic

“…17 In pediatrics, the factors most responsible for patients' overall satisfaction with care appear to be dependent on discipline and setting (ie, ambulatory, inpatient, subspecialty, emergency). 18 A need for a focused oncology-oriented approach to patient satisfaction has been suggested, 19 with evaluations of patient experience in medical oncology underway in London 20 and Scotland. 21 Expert opinion has also been solicited in an attempt to identify components of patient experience thought to be most important to medical oncology patients.…”