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.

Factors influencing cancer patients’ experiences of care in the USA, United Kingdom, and Canada: A systematic review

“… 6 , 53 , 57 , 60 In the UK, two studies of the role of clinical nurse specialists in cancer care found that contact with them was subsequently associated better experiences of involvement in treatment decisions, care co-ordination and being treated with more respect and dignity. 64 , 65 Furthermore, better experiences in terms of the patient-provider relationship were also found to improve adherence to office visits for colorectal cancer surveillance in USA. 57 In addition patients who reported that their self-goal of treatment was to cure their cancer rather than to control it reported better experiences with access to care, coordination of care, respect for patient preferences, communication, and emotional support.…”

“…CPES used on its own without qualitative data might not always be helpful for developing accurate improvement plans for cancer patient experiences. Prue et al., 2021 65 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) A qualitative study using CPES data from 2018 in Northern Ireland The study aimed to analyse free-text responses from CPES in Northern Ireland in 2018 to understand patients’ experiences of care 2 Overall, respondents reported very positive experiences of the cancer service in Northern Ireland. Positive experiences were attributed to the caring and professional nature of cancer staff, but some specific concerns about aftercare and perceived disconnect between primary and secondary care.…”

Inequalities in patients’ experiences with cancer care: the role of economic and health literacy determinants

“…This suggests that having care coordinators in the healthcare team providing tailored information may facilitate navigation within the healthcare system for disadvantaged patients with low health literacy and improve their experiences with care [ 84 ]. Additionally, research showed that clinical nurse specialists played an important role in improving experiences of care coordination, participation in treatment decisions, and feeling treated with respect and dignity [ 85 , 86 ]. As Nutbeam and Lloyd [ 53 ] highlighted, there is a need to shift focus from individual-level interventions to organisational- and community-level interventions, such as efforts aiming at reducing organisational complexity within healthcare systems to improve accessibility and understanding of health information.…”

Facilitators and Challenges in Patient's Satisfaction with Quality of Cervical Cancer Care in a Tertiary Care Hospital, Puducherry, India: A Qualitative Study

“…The majority of the challenges reported by HCPs and patients in this study were due to a lack of knowledge among patients that resulted in myths, and the fear of disease and treatment. Some patients even thought of radiation as current and refused treatment, similar patient experiences were also explored in a study by Prue et al 21 These factors may contribute to defaulting the treatment and can lead to relapse or recurrence, with increasing severity of difficultto-manage symptoms. Lack of family support, long travel times, wage loss, and a lack of information about the significance of treatment continuation were also cited as reasons for default.…”