Evaluation of Patient-Reported Experiences in the NHS Bowel Cancer Screening Programme

Abstract

Colorectal cancer (CRC, also known as ‘bowel cancer’) is the second leading cause of cancer death in England. Population-based screening can detect CRC before symptoms develop. Therefore, the National Health Service (NHS) introduced the English Bowel Cancer Screening Programme (BCSP) in 2006, which offered two yearly screening to 60-69 year olds, via gFOBt. Since 2019, the age range has extended to 50-74, and gFOBT has been replaced with FIT. Adults with abnormal FIT results are offered further investigations, usually in the form of colonoscopy. Patient experience is essential for maintaining and improving quality of care. At present, the programme issues a postal questionnaire to individuals who require further testing. However, due to the aforementioned changes in the BCSP, there is a need to update the questionnaire. The aim of this PhD was to systematically develop an updated patient experience survey for the English BCSP. This thesis, a comprehensive exploration of patient experience in the BCSP, comprises of 10 chapters. Chapter 1 provides an overview of the burden of CRC and introduces patient-reported experience measures. Chapter 2 provides the overall aim and objectives of the PhD thesis. Chapter 3 then reports the results of a systematic review of the literature exploring patient-reported experiences among screening eligible adults with an abnormal gFOBt/FIT and requires further investigation. Chapter 4 subsequently reports the first empirical study, which took place during COVID-19 restrictions in 2020. The study was conducted at a local screening centre, to assess experience with the programme, anxiety related to COVID, and measures implemented to mitigate infection. Chapter 5 took place once services resumed at a national level, and reports the development, evaluation, and acceptability of a new questionnaire for people with FIT abnormal results in the NHS BCSP with a small sample (n=59). Chapter 6 then describes a cross-sectional study with a larger sample (n=384), which examined patients’ reported experience of colonoscopy. Chapter 7 tests the feasibility and acceptability of an online patient-reported experience measure for the FIT abnormal results questionnaire. Chapter 8 develops a new questionnaire for people with a normal FIT result. Chapter 9, the final study, targeted the non-responders to the NHS BCSP. The thesis concludes with a chapter on the key findings of the systematic approach to developing a patient experience survey for the BCSP and its implications for policy and practice