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)

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. These results can help inform the effective delivery of cancer services in Northern Ireland.