Exploring the decision to participate in the National Health Service Bowel Cancer Screening Programme

Abstract

Cancer is a leading cause of mortality and one of the most feared diseases in modern society. A combination of early detection, accurate diagnosis and effective treatment provides the best defence against cancer morbidity; therefore, promoting cancer awareness and encouraging cancer screening is a priority in any comprehensive cancer control policy. Colorectal cancer is the third most common form of cancer in the UK and in an effort to reduce the high incidence, prevalence, morbidity and mortality rates, the National Health Service (NHS) has introduced the NHS Bowel Cancer Screening Programme (NHS BCSP). For the NHS BCSP to succeed in its goal of reducing the incidence and prevalence rates for colorectal cancer, individuals need to be persuaded to complete the test. Since it was first introduced in 2007, however, participation rates have been low. In an effort to understand why participation rates remain low, this article reports on the findings of a series of focus groups conducted in the East Midlands of England. These focus groups were designed to explore the factors that influence an individual's decision to participate in cancer screening. The findings revealed eight factors that affected participation in the NHS BCSP: (i) the association of screening with entry into old age; (ii) prior experience with health systems; (iii) the support of a significant other; (iv) individual perceptions of risk (and benefit); (v) fear of becoming a cancer patient after the screening test; (vi) lack of disease symptoms; (vii) embarrassment associated with completing the test and (viii) messages that adopt a paternalistic ethos. Overall, our results suggest that more people may participate in the screening programme if it was more sensitive to these psychosocial and contextual factors that shape an individual's decision to be tested.

Systematic Review and Meta-study Synthesis of Qualitative Studies Evaluating Facilitators and Barriers to Participation in Colorectal Cancer Screening

“…therefore you just need to be cognizant of that and take preventative steps to ensure that your longevity continues" (57). Having a close individual affected by colorectal cancer was a key driver for colorectal cancer screening (13,52,55,(58)(59)(60)(61)(62) as this increased a sense of vulnerability and the value of early detection. This was particularly true if the close individual survived because of early detection through screening.…”

“…Spouses were an instrumental motivator for screening; several studies found wives influenced and convinced their husbands to complete the test (13,31,34,57,58,(61)(62)(63)(64)(65)(66). Some participants attributed their knowledge of colorectal cancer and colorectal cancer screening to friends, family, and partners (11, 16, 31, 35-37, 39, 40, 44, 46, 47, 51, 52, 58, 66-74).…”

Testing innovative strategies to reduce the social gradient in the uptake of bowel cancer screening: a programme of four qualitatively enhanced randomised controlled trials

“…33,42,50,51,53 An association between being invited to be screened and entry into 'old age' has also been identified as a factor influencing the decision to be screened. 52 The need to deal with faeces to complete the test has not been reported as a major barrier to participation in screening, with previous studies 42 reporting that the majority of respondents have not tended to express disgust or reluctance to handle faecal matter. However, the material realities of the gFOBt do constitute a barrier to participation for some individuals.…”

“…In one, the majority of the participants had completed the gFOBt kit 50 and the other two report on small samples, each restricted to one geographical area in England. 33,52 The experiences of individuals who have been invited to the NHS BCSP and have not taken part, who might be expected to offer the richest insights into screening non-uptake, have been largely absent from the research literature to date. Furthermore, the beliefs of individuals who do not take part in one round of screening but subsequently take part in another round is limited to one recent study which describes how beliefs, awareness and intention change over time.…”

“…[44][45][46][47] This limits their applicability to the UK NHS BCSP. The sparse literature focusing on gFOBt 33,42,[48][49][50][51][52] has identified reasons for non-uptake including feeling healthy and having no bowel symptoms, fear of the outcome of screening and 'not wanting to know', which was often linked to doubts about the value of screening to detect health problems. Difficulties in understanding the kit instructions, concerns about hygiene and storage of the kit, avoiding or delaying decision-making, intention to take part but failure to do so owing to practicalities, and the preference for a doctor to do such tests have also been identified as reasons for not completing screening.…”