Concerns, perceived need and competing priorities: a qualitative exploration of decision-making and non-participation in a population-based flexible sigmoidoscopy screening programme to prevent colorectal cancer

Objective Optimising uptake of colorectal cancer (CRC) screening is important to achieve projected health outcomes. Population-based screening by flexible sigmoidoscopy (FS) was introduced in England in 2013 (NHS Bowel scope screening). Little is known about reactions to the invitation to participate in FS screening, as offered within the context of the Bowel scope programme. We aimed to investigate responses to the screening invitation to inform understanding of decision-making, particularly in relation to non-participation in screening. Design Qualitative analysis of semistructured in-depth interviews and written accounts. Participants and setting People from 31 general practices in the North East and East of England invited to attend FS screening as part of NHS Bowel scope screening programme were sent invitations to take part in the study. We purposively sampled interviewees to ensure a range of accounts in terms of beliefs, screening attendance, sex and geographical location. Results 20 screeners and 25 non-screeners were interviewed. Written responses describing reasons for, and circumstances surrounding, non-participation from a further 28 non-screeners were included in the analysis. Thematic analysis identified a range of reactions to the screening invitation, decision-making processes and barriers to participation. These include a perceived or actual lack of need; inability to attend; anxiety and fear about bowel preparation, procedures or hospital; inability or reluctance to self-administer an enema; beliefs about low susceptibility to bowel cancer or treatment and understanding of harm and benefits. The strength, rather than presence, of concerns about the test and perceived need for reassurance were important in the decision to participate for screeners and non-screeners. Decision-making occurs within the context of previous experiences and day-to-day life. Conclusions Understanding the reasons for non-participation in FS screening can help inform strategies to improve uptake and may be transferable to other screening programmes.

No specific concern. Has many other more prominent health problems Not realised needed to confirm appointment Lost 1close friend to cancer (bowel), 1 had a diagnosis (bowel) but is fine and 1 is in terminal stages (bowel). High cancer concern and has current symptoms. Screening would offer reassurance.
Recent endoscopy after bowel change and bleeding No specific concern Hadn't realised needed to call to confirm  F 3

No specific concern
First appointment cancelled by screening centre. Appointment rebooked but clashed with hip operation Recently had a colonoscopy. Phoned and advised screening not needed. Would prefer to let someone else have appointment. Cancer concern/susceptibility Main reported reason for nonscreening Would consider in future?

Strong family history (bowel) and high cancer concern
Unable to attend appointment due to caring responsibilities No specific concern Chronic illness affects ability to get to hospital  F 1

+ --+ --
No specific concern Potential risk of test. Undergoing other medical treatment.
No specific concern Life too chaotic following marriage breakdown  F 1
All seemed too messy and inconvenient. Couldn't administer the enema at work

No specific concern
Panic about hospitals. Last scope 2 years ago was painful. Couldn't administer own enema. No opportunities for sedation.
Unable to administer the enema on own due to MS and appointment not convenient, No chances to reschedule.
No specific concern Does not feel unhealthy No concern. Feels safe in own self care and awareness Friends reported bad experience. Has ongoing health issues relating to cirrhosis and does not wish to risk complications due to caring responsibilities for mother.
Fear of hospitals. Complicated medical history and sigmoidoscopy 2 years earlier. Had cancer before and knows benefits of catching things early M 1 ++ ++ + ++ Family history of bowel cancer (father and grandfather ). High concern and recently presented to GP with symptoms.

X
To put mind at rest M 2 + -+ + Cousin diagnosed with cancer (bowel) and friend. No particular concern but experienced bleeding from haemorrhoids. Own cancer and awareness of the importance of catching early.
F 2 ++ + + + Uncle with cancer (bowel). High concern due to family history and own symptoms Wanted reassurance due to uncle's diagnosis and own symptoms.
F 1 ++ + + -High concern due to previous polyps. Opportunity for reassurance due to previous polyps.
Opportunity to catch anything early and better chances of survival. Thought it was a recall for genetic screening. Wanted reassurance.
M 3 ++ ++ ++ + Mother and father in law died ca and friends at work. General cancer concern.
Wanted peace of mind. Prevention better than cure.
Thought appointment was related to ongoing cancer investigations/treatment. Good to have reassurance F 1 + + ++ + Lost 1 friend to cancer (breast) and another had a good outcome. Mother recently had precancerous polyp removed.
Conscious about bowel cancer, glad for reassurance and good opportunity.