Ethnic inequalities in older adults bowel cancer awareness: findings from a community survey conducted in an ethnically diverse region in England

BACKGROUND: To date, research exploring the public’s awareness of bowel cancer has taken place with predominantly white populations. To enhance our understanding of how bowel cancer awareness varies between ethnic groups, and inform the development of targeted interventions, we conducted a questionnaire study across three ethnically diverse regions in Greater London, England. METHODS: Data were collected using an adapted version of the bowel cancer awareness measure. Eligible adults were individuals, aged 60+ years, who were eligible for screening. Participants were recruited and surveyed, verbally, by staff working at 40 community pharmacies in Northwest London, the Harrow Somali association, and St. Mark’s Bowel Cancer Screening Centre. Associations between risk factor, symptom and screening awareness scores and ethnicity were assessed using multivariate regression. RESULTS: 1013 adults, aged 60+ years, completed the questionnaire; half were of a Black, Asian or Minority ethnic group background (n = 507; 50.0%). Participants recognised a mean average of 4.27 of 9 symptoms and 3.99 of 10 risk factors. Symptom awareness was significantly lower among all ethnic minority groups (all p’s < 0.05), while risk factor awareness was lower for Afro-Caribbean and Somali adults, specifically (both p’s < 0.05). One in three adults (n = 722; 29.7%) did not know there is a Bowel Cancer Screening Programme. Bowel screening awareness was particularly low among Afro-Caribbean and Somali adults (both p’s < 0.05). CONCLUSION: Awareness of bowel cancer symptoms, risk factors and screening varies by ethnicity. Interventions should be targeted towards specific groups for whom awareness of screening and risk factors is low

Using a hypothetical scenario to assess public preferences for colorectal surveillance following screening-detected, intermediate-risk adenomas: annual home-based stool test vs. triennial colonoscopy

Background To assess public preferences for colorectal cancer (CRC) surveillance tests for intermediate-risk adenomas, using a hypothetical scenario. Methods Adults aged 45–54 years without CRC were identified from three General Practices in England (two in Cumbria, one in London). A postal survey was carried out during a separate study on preferences for different first-line CRC screening modalities (non- or full-laxative computed tomographic colonography, flexible sigmoidoscopy, or colonoscopy). Individuals were allocated at random to receive a pack containing information on one first-line test, and a paragraph describing CRC surveillance recommendations for people who are diagnosed with intermediate-risk adenomas during screening. All participants received a description of two surveillance options: annual single-sample, home-based stool testing (consistent with Faecal Immunochemical Tests; FIT) or triennial colonoscopy. Invitees were asked to imagine they had been diagnosed with intermediate-risk adenomas, and then complete a questionnaire on their surveillance preferences. Results 22.1 % (686/3,100) questionnaires were returned. 491 (15.8 %) were eligible for analysis. The majority of participants stated a surveillance preference for the stool test over colonoscopy (60.8 % vs 31.0 %; no preference: 8.1 %; no surveillance: 0.2 %). Women were more likely to prefer the stool test than men (66.7 % vs. 53.6 %; p = .011). The primary reason for preferring the stool test was that it would be done more frequently. The main reason to prefer colonoscopy was its superiority at finding polyps. Conclusions A majority of participants stated a preference for a surveillance test resembling FIT over colonoscopy. Future research should test whether this translates to greater adherence in a real surveillance setting

Comparing perceived clarity of information on overdiagnosis used for breast and prostate cancer screening in England: an experimental survey.

OBJECTIVES: 'Overdiagnosis', detection of disease that would never have caused symptoms or death, is a public health concern due to possible psychological and physical harm but little is known about how best to explain it. This study evaluated public perceptions of widely used information on the concept to identify scope for improving communication methods. DESIGN: Experimental survey carried out by a market research company via face-to-face computer-assisted interviews. SETTING: Interviews took place in participants' homes. PARTICIPANTS: 2111 members of the general public in England aged 18-70 years began the survey; 1616 were eligible for analysis. National representativeness was sought via demographic quota sampling. INTERVENTIONS: Participants were allocated at random to receive a brief description of overdiagnosis derived from written information used by either the NHS Breast Screening Programme or the prostate cancer screening equivalent. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was how clear the information was perceived to be (extremely/very clear vs less clear). Other measures included previous exposure to screening information, decision-making styles and demographic characteristics (eg, education). Binary logistic regression was used to assess predictors of perceived clarity. RESULTS: Overdiagnosis information from the BSP was more likely to be rated as more clear compared with the prostate screening equivalent (adjusted OR: 1.43, 95% CI 1.17 to 1.75; p=0.001). Participants were more likely to perceive the information as more clear if they had previously encountered similar information (OR: 1.77, 1.40 to 2.23; p<0.0005) or a screening leaflet (OR: 1.35, 1.04 to 1.74; p=0.024) or had a more 'rational' decision-making style (OR: 1.06, 1.02 to 1.11; p=0.009). CONCLUSIONS: Overdiagnosis information from breast screening may be a useful template for communicating the concept more generally (eg, via organised campaigns). However, this information may be less well-suited to individuals who are less inclined to consider risks and benefits during decision-making

Behavioural Challenges Associated With Risk-Adapted Cancer Screening.

Cancer screening programmes have a major role in reducing cancer incidence and mortality. Traditional internationally-adopted protocols have been to invite all 'eligible individuals' for the same test at the same frequency. However, as highlighted in Cancer Research UK's 2020 strategic vision, there are opportunities to increase effectiveness and cost-effectiveness, and reduce harms of screening programmes, by making recommendations on the basis of personalised estimates of risk. In some respects, this extends current approaches of providing more intensive levels of care outside screening programmes to individuals at very high risk due to their family history or underlying conditions. However, risk-adapted colorectal cancer screening raises a wide range of questions, not only about how best to change existing programmes but also about the psychological and behavioural effects that these changes might have. Previous studies in other settings provide some important information but remain to be tested and explored further in the context of colorectal screening. Conducting behavioural science research in parallel to clinical research will ensure that risk-adapted screening is understood and accepted by the population that it aims to serve.Dr Usher Smith is funded by a NIHR Advanced Fellowship NIHR30086

Behavioural Challenges Associated With Risk-Adapted Cancer Screening

Cancer screening programmes have a major role in reducing cancer incidence and mortality. Traditional internationally-adopted protocols have been to invite all 'eligible individuals' for the same test at the same frequency. However, as highlighted in Cancer Research UK's 2020 strategic vision, there are opportunities to increase effectiveness and cost-effectiveness, and reduce harms of screening programmes, by making recommendations on the basis of personalised estimates of risk. In some respects, this extends current approaches of providing more intensive levels of care outside screening programmes to individuals at very high risk due to their family history or underlying conditions. However, risk-adapted colorectal cancer screening raises a wide range of questions, not only about how best to change existing programmes but also about the psychological and behavioural effects that these changes might have. Previous studies in other settings provide some important information but remain to be tested and explored further in the context of colorectal screening. Conducting behavioural science research in parallel to clinical research will ensure that risk-adapted screening is understood and accepted by the population that it aims to serve

Improving communication about cancer screening: moving towards informed decision making

For decades, public communications about cancer screening have used persuasive techniques with the aim of maximising the number of people being screened. However, perspectives have changed more recently to acknowledge that screening can lead to harm as well as benefit, and that it is important for service users to consider both. For some types of cancer screening, there is professional contention about whether benefits clearly outweigh harms. In light of this, an emerging trend in cancer screening communication is to try to support informed decision making - that is, to help people understand both the advantages and disadvantages of screening, allowing them to make individual decisions about their screening participation that reflect their informed preferences. In this review, we provide an overview of key theoretical and practical aspects of improving communication and supporting informed decision making about cancer screening, highlight relevant research and discuss future implications

Survey of public definitions of the term 'overdiagnosis' in the UK

Objectives: To determine how ‘overdiagnosis’ is currently conceptualised among adults in the United Kingdom (UK) in light of previous research, which has found that the term is difficult for the public to understand and awareness is low. This study aims to add to current debates on healthcare in which overdiagnosis is a prominent issue. Design: An observational, web-based survey was administered by a survey company. Setting: Participants completed the survey at a time and location of their choosing. Participants: 390 consenting UK adults aged 50-70 years. Quota sampling was used to achieve approximately equal numbers in three categories of education. Primary outcome measures: Participants were asked whether they had seen or heard the term ‘overdiagnosis’. If they had, they were then invited to explain in a free text field what they understood it to mean. If they had not previously encountered it, they were invited to say what they thought it meant. Responses were coded and interpreted using content analysis and descriptive statistics. Results: Data from 390 participants were analysed. Almost a third (30.0%) of participants reported having previously encountered the term. However, their responses often indicated that they had no knowledge of its meaning. The most prevalent theme consisted of responses related to the diagnosis itself. Subthemes indicated common misconceptions, including an ‘overly negative or complicated diagnosis’, ‘false positive diagnosis’ or ‘misdiagnosis’. Other recurring themes consisted of responses related to testing (i.e. ‘too many tests’), treatment (e.g. ‘overtreatment’), and patient psychology (e.g. ’overthinking’). Responses categorised as consistent with ‘overdiagnosis’ (defined as detection of a disease that would not cause symptoms or death) were notably rare (n=10; 2.6%). Conclusions: Consistent with previous research, public awareness of ‘overdiagnosis’ in the UK is low and its meaning is often misunderstood or misinterpreted

Testing whether barriers to a hypothetical screening test affect unrelated perceived benefits and vice versa: A randomised, experimental study

OBJECTIVE: Determine whether (fictitious) health screening test benefits affect perceptions of (unrelated) barriers, and barriers affect perceptions of benefits. METHODS: UK adults were recruited via an online survey panel and randomised to receive a vignette describing a hypothetical screening test with either high or low benefits (higher vs. lower mortality reduction) and high or low barriers (severe vs. mild side-effects; a 2×2 factorial design). ANOVAs compared mean perceived benefits and barriers scores. Screening 'intentions' were compared using Pearson's χ(2) test. RESULTS: Benefits were rated less favourably when barriers were high (mean: 27.4, standard deviation: 5.3) than when they were low (M: 28.5, SD: 4.8; p=0.010, partial η(2)=0.031). Barriers were rated more negatively when benefits were low (M: 17.1, SD: 7.6) than when they were high (M: 15.7, SD: 7.3; p=0.023, partial η(2)=0.024). Most intended to have the test in all conditions (73-81%); except for the low benefit-high barrier condition (37%; p<0.0005; N=218). CONCLUSIONS: Perceptions of test attributes may be influenced by unrelated characteristics. PRACTICE IMPLICATIONS: Reducing screening test barriers alone may have suboptimal effects on perceptions of barriers if benefits remain low; increasing screening benefits may not improve perceptions of benefits if barriers remain high

Acceptability of risk-stratified breast screening: Effect of the order of presenting risk and benefit information

OBJECTIVE: To test whether reduced-frequency risk-stratified breast screening would be perceived more favourably by transposing the order of information on benefits and risks. METHODS: After reading vignettes describing non-stratified three-yearly screening and a risk-stratified alternative with five-yearly invitations for women at low risk, 698 women completed an online survey. Participants were allocated at random to information on screening benefits followed by risks, or vice versa, and asked to state preferences for either screening system. Participants also rated perceived magnitude of screening benefits and risks, and breast cancer susceptibility. RESULTS: Binomial logistic regression did not find order effects on preferences (p = 0.533) or perceived benefits of screening (p = 0.780). Perceived screening risks were greater when risks were presented first (p < 0.0005). Greater perceived susceptibility was associated with lower proportions preferring risk-stratified screening (15% vs. 39% in highest and lowest groups; p = 0.002), as were greater perceived screening benefits (e.g. 13% vs. 45% in highest and lowest groups; p < 0.0005). CONCLUSIONS: No information order effect on preferences was observed. Information order did affect screening risk perceptions. Efforts to improve perceptions may need to be more intensive than those tested. Women perceiving themselves as high risk or perceiving greater benefits of screening may be particularly averse to less frequent screening