Exploring patient experiences of cancer care in Northern Ireland: A thematic analysis of free-text responses to the 2018 Northern Ireland Patient Experience Survey (NICPES)

Prue, Gillian; O’Connor, Dominic; Brown, Malcolm; Santin, Olinda

Abstract

Background
Cancer diagnosis, treatment and survivorship is multifaceted, and the cancer patient experience can serve as a key indicator of healthcare performance and quality. The purpose of this paper was to analyse free-text responses from the second Northern Ireland Cancer Patient Experience Survey (NICPES) in 2018, to understand experiences of care, emerging themes and identify areas for improvement.

Methods
A 72-item questionnaire (relating to clinical care experience, socio-demographics and 3 free-text questions) was distributed to all Health & Social Care Northern Ireland patients that met the inclusion criteria (≥ 16 years old; confirmed primary diagnosis of cancer and discharged between 1st May and 31st October 2017) in June 2018. Participants could complete the questionnaire online or access a free telephone support line if required. Open-ended free text responses were analysed thematically to identify common themes. Free text responses were divided into positive or negative comments.

Results
In total, 3,748 people responded to the survey, with 2,416 leaving at least one free text comment (69 %). Women aged 55–74 years were most likely to comment. Overall, 3,644 comments were left across the three comments boxes, which were categorised as either positive (2,462 comments; 68 %) or negative / area for improvement (1,182 comments; 32 %). Analysis of free text responses identified six common themes (staff; speed [diagnosis and treatment]; safety; system; support services and specific concerns), which were all related to the overarching theme of survival. Staff was the largest single theme (1,458 responses) with overwhelmingly positive comments (1,322 responses; 91 %), whilst safety (296 negative comments; 70 %) and system (340 negative comments; 81 %) were predominantly negative. Negative comments relating to primary care, aftercare and the cancer system were reported.

Conclusions
The high response rate to the free text comments indicates patients were motivated to engage. Analysis indicates most comments provided were positive in nature. Most survey respondents reported a positive experience in relation to staff. However, there were a number of areas for improvement including the aftercare experience, and a perceived disconnect between primary care and cancer services

Citation

Prue, G., O’Connor, D., Brown, M., & Santin, O. (2021). Exploring patient experiences of cancer care in Northern Ireland: A thematic analysis of free-text responses to the 2018 Northern Ireland Patient Experience Survey (NICPES). BMC Health Services Research, 21, Article 564. https://doi.org/10.1186/s12913-021-06577-z

• Journal Article Type: Article
• Acceptance Date: May 26, 2021
• Online Publication Date: Jun 7, 2021
• Publication Date: 2021
• Deposit Date: Oct 2, 2023
• Publicly Available Date: Nov 16, 2023
• Journal: BMC Health Services Research
• Electronic ISSN: 1472-6963
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 21
• Article Number: 564
• DOI: https://doi.org/10.1186/s12913-021-06577-z
• Keywords: Health Policy
• Public URL: https://nottingham-repository.worktribe.com/output/12036470
• Publisher URL: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-021-06577-z