What affects the uptake of screening for bowel cancer using a faecal occult blood test (FOBt): A qualitative study

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Abstract

Screening can reduce bowel cancer mortality. The UK National Health Service Bowel Cancer Screening Programme (NHS BCSP), using the Faecal Occult Blood test (FOBt), is being introduced over three years in the UK, but in some areas uptake is disappointing. We sought to understand why some people decided to participate in screening for bowel cancer while others did not. Interviews were conducted with 44 men and women invited for screening. Most had decided to take part, some were reluctant, and a few had declined to participate. We aimed for a maximum variation sample. Reasons for accepting screening included: knowing someone with cancer, previous positive experience of women's screening programmes, being a “good citizen”, previous bowel problems, and encouragement from others. Reasons for reluctance to take part included: feeling healthy, fear of outcome, lack of time, disgust at the idea of handling stools, concern about posting samples in the mail, misunderstanding instructions, and past (negative) experience or fear of colonoscopy. Theoretical models of health behaviours do not mention the sense of civic responsibility that encourages people to avert (later) costs to the NHS. This may be a particular feature of a socialized health system. Our results also suggest that people might feel more inclined to accept screening if they had current information about patients' experiences of colonoscopy and treatment for early bowel cancer.

Introduction

Bowel cancer is common in many countries and is a leading cause of cancer mortality and morbidity (Keighley et al., 2004, Office of National Statistics, 2005, U.S. Cancer Statistics Working Group, 2006). Survival rates are higher when the disease is detected early, and screening with the Faecal Occult Blood test (FOBt) can reduce bowel cancer mortality by 16% (Hewitson, Glasziou, Irwig, Towler, & Watson, 2007).

Several studies in the United States (Beeker et al., 2000, O'Malley et al., 2004, Wackerbath et al., 2005), Australia (Clavarino et al., 2004, Dent et al., 1983, Worthley et al., 2006) and Europe (Rossi et al., 2005) have identified factors that may influence people's decisions about whether to take part in screening for bowel cancer. Research done in other countries can help us to understand why people make screening decisions, but researchers and policy makers should remember that screening strategies elsewhere may differ. In the United States, for example, screening is predominately opportunistic rather than part of an organised programme, and people choose between flexible sigmoidoscopy, double contrast barium enema, colonoscopy and annual FOBt. Some programmes ask people to collect the FOBt kit from their GP or from their local hospital. This takes time and affects uptake (Dent et al., 1983). Where people have to pay for screening the cost may affect uptake (Beeker et al., 2000, O'Malley et al., 2004). Cultural factors also need to be considered. People living in Britain are more aware of the benefits of early treatment than people living in some other European countries but discussion about bowels is more likely to embarrass them (Keighley et al., 2004).

In the United Kingdom, bowel cancer is the second leading cause of cancer mortality (Office of National Statistics, 2005). In 2000, the UK government commissioned a pilot programme to test the feasibility of a biennial FOBt as a population screening tool for bowel cancer. It showed that screening using the FOBt was indeed feasible within the context of the NHS (Weller et al., 2003). In 2006, the NHS National Bowel Cancer Screening programme (NHS BCSP) commenced, and by 2009, it is expected that all those living in England aged 60–69 years will have been offered screening. This is the first UK mass screening programme to use a self-sampling kit and the first to be offered to men as well as women. People are sent detailed information and a test kit from one of the screening centres or ‘hubs’ and asked to collect their stool samples for the FOB test. They are then asked to post their FOB test kit to a laboratory where the samples are analysed. If a sample is positive the person concerned may be asked to repeat the test or invited to have a colonoscopy. Each ‘hub’ is responsible for up to 20 centres whose responsibilities include nurse clinics and colonoscopy, pathology and radiology services.

To reduce mortality from bowel cancer and to make screening cost effective it is important that people should participate in the screening programme (Miles, Cockburn, Smith, & Wardle, 2004). Among those aged 60 years and over, uptake was 62.1% during the first round of the pilot scheme and 56.8% during the second pilot (Weller et al., 2006). However, in Wolverhampton, one of the first areas of England to take part in the programme, uptake in 2007 was only 45% (Pollit, 2007).

Researchers have often tried to understand screening decisions in terms of existing theoretical models of health behaviour. Forty years ago, Rosenstock (1966) found the Health Belief Model helpful when trying to understand why people decide to take part in screening. This model suggests that the decision to perform a preventive test in the absence of symptoms will not be made unless the individual feels susceptible to the condition, thinks the condition has serious consequences, believes that the preventive test is feasible and appropriate to use, would reduce perceived susceptibility or severity of the health condition, and if there are no serious psychological barriers to the proposed action. The model also suggests that the person will receive a cue or stimulus to perform the test. The cue may be bodily state, or interpersonal interactions, or the impact of the media, or receiving an invitation for screening.

Neilson and Whynes (1995) suggest that although the Health Belief Model may predict who initially agrees to take part in screening it does not predict actual compliance. Others have criticised the model for over-emphasising the rationality of behaviour and excluding emotional factors from the decision-making process (Gillam, 1991). However, Rosenstock (1966, p. 99), who formulated the Health Belief Model, knew that emotion affected readiness to act: he notes that “underlying emotional aspects have greater value in accounting for behaviour than do the cognitive elements”. Although the Health Belief Model recognises that “decision-making is a process in which an individual moves through a series of stages or phases” (Rosenstock, 1966, p. 97), other models give greater prominence to operationalising the particular stages that influence or predict an individual's health behaviour for adopting a recommended action (Conner and Norman, 1995, Prochaska and DiClemente, 1983).

Some UK work has explored reasons for people's attitudes to screening for bowel cancer. McCaffery et al. (2001) used telephone interviews to find out why people declined the offer of flexible sigmoidoscopy. This screening strategy is not used in the current NHS screening programme, but some of their findings may be relevant to our research. O'Sullivan and Orbell (2004) used focus groups to explore men and women's understanding of screening and their reactions to a FOBt kit. However, none of the focus group participants had, at that point, been invited to participate in the UK pilot scheme or do a FOBt, so people were not describing how they had actually made decisions.

Some groups of people living in the UK are less likely than others to take part in screening for bowel cancer (Neilson & Whynes, 1995). Those least likely to participate are men, younger people, those in materially deprived areas, and individuals from minority ethnic groups (Weller et al., 2003, Weller et al., 2006).

Little research has asked why people have decided to take part in the UK bowel cancer screening pilot schemes, and even less is known about why some people decide not to participate. In Scotland, Jepson, Hewison, Thompson, and Weller (2007) conducted three focus groups with people participating in the pilot scheme. In England, Weller et al. (2003) did a survey after the initial pilot scheme. Focus groups also included people from minority ethnic groups (Szczepura et al., 2003).

Our study adds to those data in two main respects:

  • We conducted individual in-depth interviews, rather than using questionnaires or focus groups, which allowed people to speak at length and to talk openly without feeling any pressure they had to conform to a group norm.

  • Almost half of the interviews were with people who were screened in 2006, after the main UK screening programme had started (and extended to more than one area), and after the information leaflets had been improved.

The overall aim of the study was to explore people's experience of screening and to understand decision-making. Here, we focus on why some people decided to take part in screening while others felt reluctant to participate or declined to take part.

Section snippets

Method

After receiving multicentre research ethics committee (MREC) approval, we asked people who had been invited to take part in either the NHS bowel cancer screening programme, or the pilot, to be interviewed for the DIPEx website (www.dipex.org). This website is a resource featuring excerpts from narrative interviews about people's experiences of health and illness. Further information about the DIPEx project can be found on the website (www.dipex.org) and elsewhere (Herxheimer & Ziebland, 2004).

Factors affecting the decision to accept screening

People gave many reasons for taking part in screening. Some had other bowel problems in the past, such as haemorrhoids, which made them keen to participate, but there were other notable reasons.

Discussion

Our study is important because we heard not only the views of those who had taken part in screening but we also explored those people who had decided not to participate, or who reported that they had delayed doing the FOBt for months or even years. The overall aim of our study was to explore people's experience of screening, though we also wanted to understand decision-making. Many other studies are designed to explore components of models of health behaviour, but if we had done that we might

Acknowledgements

We thank the people who gave their time for the interviews, those who helped us recruit, and members of our advisory panel. The National Screening Committee funded the research. We also thank Cancer Research UK for a personal award to Sue Ziebland, and two referees for their useful comments on an earlier draft of this article. The Department of Primary Health Care is part of the NIHR School for Primary Care Research.

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