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.

Evaluating the effect of short-course rifapentine-based regimens with or without enhanced behaviour-targeted treatment support on adherence and completion of treatment for latent tuberculosis infection among adults in the UK (RID-TB: Treat): protocol for an open-label, multicentre, randomised controlled trial.

INTRODUCTION: The successful scale-up of a latent tuberculosis (TB) infection testing and treatment programme is essential to achieve TB elimination. However, poor adherence compromises its therapeutic effectiveness. Novel rifapentine-based regimens and treatment support based on behavioural science theory may improve treatment adherence and completion. METHODS AND ANALYSIS: A pragmatic multicentre, open-label, randomised controlled trial assessing the effect of novel short-course rifapentine-based regimens for TB prevention and additional theory-based treatment support on treatment adherence against standard-of-care. Participants aged between 16 and 65 who are eligible to start TB preventive therapy will be recruited in England. 920 participants will be randomised to one of six arms with allocation ratio of 5:5:6:6:6:6: daily isoniazid +rifampicin for 3 months (3HR), routine treatment support (control); 3HR, additional treatment support; weekly isoniazid +rifapentine for 3 months (3HP), routine treatment support; weekly 3HP, additional treatment support ; daily isoniazid +rifapentine for 1 month (1HP), routine treatment support; daily 1HP, additional treatment support. Additional treatment support comprises reminders using an electronic pillbox, a short animation, and leaflets based on the perceptions and practicalities approach. The primary outcome is adequate treatment adherence, defined as taking ≥90% of allocated doses within the pre-specified treatment period, measured by electronic pillboxes. Secondary outcomes include safety and TB incidence within 12 months. We will conduct process evaluation of the trial interventions and assess intervention acceptability and fidelity and mechanisms for effect and estimate the cost-effectiveness of novel regimens. The protocol was developed with patient and public involvement, which will continue throughout the trial. ETHICS AND DISSEMINATION: Ethics approval has been obtained from The National Health Service Health Research Authority (20/LO/1097). All participants will be required to provide written informed consent. We will share the results in peer-reviewed journals. TRIAL REGISTRATION NUMBER: EudraCT 2020-004444-29.

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.

Offering disinclined people the choice between different screening appointments: a randomised online survey.

OBJECTIVES: An invitation to cancer screening with a single (fixed) appointment time has been shown to be a more effective way at increasing uptake compared with an invitation with an open (unscheduled) appointment. The present study tested whether offering more than one fixed appointment could further enhance this effect or be detrimental to people's intention. DESIGN: Experimental online hypothetical vignette survey. METHODS: 1,908 respondents who stated that they did not intend to participate in Bowel Scope Screening (BSS) were offered either one, two, four or six hypothetical fixed BSS appointments (all of which covered the same time of day to control for individual preferences). RESULTS: Participants who were given more than one appointment to choose from were less likely to intend to book an appointment despite multiple appointments being perceived as more convenient. CONCLUSIONS: These results suggest that when it comes to offering people appointments for cancer screening, less (choice) is more, at least if alternatives fail to serve an inherent preference.

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.

Attitudes towards risk-stratified breast cancer screening among women in England: A cross-sectional survey.

OBJECTIVES: Risk stratification may improve the benefit/harm ratio of breast screening. Research on acceptability among potential invitees is necessary to guide implementation. We assessed women's attitudes towards and willingness to undergo risk assessment and stratified screening. METHODS: Women in England aged 40-70 received summary information about the topic, and completed face-to-face computer-assisted interviews. Questions assessed willingness to undergo multifactorial breast cancer risk assessment, more frequent breast screening (if at very high risk), or less frequent or no screening (if at very low risk), and preferences for delivery of assessment results. RESULTS: Among 933 women, 85% considered breast cancer risk assessment a good idea, and 74% were willing to have it. Among 125 women unwilling to have risk assessment, reasons commonly related to 'worry' (14%) and 'preferring not to know' (14%). Among those willing to have risk assessment (n = 689), letters/emails were generally preferred (42%) for results about very low-risk status. Face-to-face communication was most commonly preferred for results of very high-risk status (78%). General practitioners were most commonly preferred sources of assessment results (≈40%). Breast cancer specialists were often preferred for results of very high-risk status (38%). Risk-stratified breast screening was considered a good idea by 70% and 89% were willing to have more frequent screening. Fewer would accept less (51%) or no screening (37%) if at very low risk. CONCLUSIONS: Women were generally in favour of multifactorial breast cancer risk assessment and risk-stratified screening. Some were unwilling to accept less or no screening if at very low risk.

Public awareness of and responses to media coverage of invitation errors in the Breast Screening Programme in England: a cross-sectional population survey.

OBJECTIVES: In May 2018, the British Health Secretary announced the 'serious failure' that 450 000 women had missed out on invitations to breast screening in England, leading to extensive media coverage. This study measured public awareness of the story and tested for associated factors (eg, educational level and trust in the National Health Service (NHS)). DESIGN: A computer-assisted face-to-face survey in June 2018. SETTING: Participants completed the survey in their homes. PARTICIPANTS: Males and females aged 16 years or older in England. PRIMARY AND SECONDARY OUTCOME MEASURES: Awareness of aspects of the media coverage and reported statistics. Other data included demographics (eg, ethnicity), awareness of unrelated contemporaneous news stories, trust in participants' general practitioners (GPs) and the NHS, and (among women) worry about breast cancer and future breast screening intentions. RESULTS: Descriptive statistics showed that 67% of 1894 participants reported being aware of the media coverage. Regression analyses showed that those who were aware of other news stories, were white British and had a higher level of education or social grade were more likely to be aware. In contrast, only 36% correctly identified at least one of two headline statistics. This study did not find evidence that awareness was negatively associated with trust in participants' GPs or the NHS, breast cancer worry or future breast cancer screening intentions. CONCLUSIONS: Awareness of the breast screening news story was high but recall of reported statistics was much lower: the public may have retained only the gist of quantitative information. Associations between story awareness and attitudes or behaviour were not apparent.

The impact of descriptive norms on motivation to participate in cancer screening - Evidence from online experiments.

OBJECTIVE: The current study tested in two online experiments whether manipulating normative beliefs about cancer screening uptake increases intention to attend colorectal screening among previously disinclined individuals. METHODS: 2461 men and women from an Internet panel (Experiment 1 N = 1032; Experiment 2, N = 1423) who initially stated that they did not intend to take up screening were asked to guess how many men and women they believe to get screened for colorectal cancer. Across participants, we varied the presence/absence of feedback on the participant's estimate, as well as the stated proportion of men and women doing the screening test. RESULTS: Across the two experiments, we found that receiving one of the experimental messages stating that uptake is higher than estimated significantly increased the proportion of disinclined men and women becoming intenders. While, we found a positive relationship between the communicated uptake and screening intentions, we did not find evidence that providing feedback on the estimate has an added benefit. CONCLUSION: Screening intention can be effectively manipulated through a high uptake message. PRACTICE IMPLICATIONS: Communication of high screening uptake is an easy and effective way to motivate disinclined individuals to engage in colorectal cancer screening.

Testing active choice for screening practitioner's gender in endoscopy among disinclined women: An online experiment.

OBJECTIVES: A large proportion of women have a preference for a same-gender endoscopy practitioner. We tested how information about practitioner gender affected intention to have bowel scope screening in a sample of women disinclined to have the test. METHODS: In an online experimental survey, women aged 35-54 living in England who did not intend to participate in bowel scope screening (N = 1060) were randomised to one of four experimental conditions: (1) control (practitioner's gender is unknown), (2) opposite-gender (male practitioner by default), (3) same gender (female practitioner by default), and (4) active choice (the patient could choose the gender of the practitioner). Intention was measured following the interventions. RESULTS: Of 1010 (95.3%) women who completed the survey, most were White-British (83.6%), and working (63.3%). Compared with control, both active choice and same-gender conditions increased intention among disinclined women (9.3% vs. 16.0% and 17.9%; OR: 1.85; 95% CI: 1.07-3.20 and OR: 2.07; 95% CI: 1.23-3.50). There were no differences in intention between the opposite-gender and control conditions (9.8% vs. 9.3%; OR: 1.06; 95% CI: 0.60-1.90) or the active choice and same-gender conditions (16.0% vs. 17.9%: OR: 0.89; 95% CI: 0.55-1.46, using same gender as baseline). CONCLUSIONS: Offering disinclined women a same-gender practitioner, either by choice or default, increased subsequent intention, while an opposite gender default did not negatively affect intention. Reducing uncertainty about gender of practitioner could positively affect uptake in women, and should be tested in a randomised controlled trial.

Improving public understanding of 'overdiagnosis' in England: a population survey assessing familiarity with possible terms for labelling the concept and perceptions of appropriate terminology.

OBJECTIVES: Communicating the concept of 'overdiagnosis' to lay individuals is challenging, partly because the term itself is confusing. This study tested whether alternative descriptive labels may be more appropriate. DESIGN: Questionnaire preceded by a description of overdiagnosis. SETTING: Home-based, computer-assisted face-to-face survey. PARTICIPANTS: 2111 adults aged 18-70 years in England recruited using random location sampling by a survey company. Data from 1888 participants were analysed after exclusions due to missing data. INTERVENTIONS: Participants were given one of two pieces of text describing overdiagnosis, allocated at random, adapted from National Health Service breast and prostate cancer screening leaflets. PRIMARY AND SECONDARY OUTCOME MEASURES: Main outcomes were which of several available terms (eg, 'overdetection') participants had previously encountered and which they endorsed as applicable labels for the concept described. Demographics and previous exposure to screening information were also measured. Main outcomes were summarised with descriptive statistics. Predictors of previously encountering at least one term, or endorsing at least one as making sense, were assessed using binary logistic regression. RESULTS: 58.0% of participants had not encountered any suggested term; 44.0% did not endorse any as applicable labels. No term was notably familiar; the proportion of participants who had previously encountered each term ranged from 15.9% to 28.3%. Each term was only endorsed as applicable by a minority (range: 27.6% to 40.4%). Notable predictors of familiarity included education, age and ethnicity; participants were less likely to have encountered terms if they were older, not white British or had less education. Findings were similar for both pieces of information. CONCLUSIONS: Familiarity with suggested terms for overdiagnosis and levels of endorsement were low, and no clear alternative labels for the concept were identified, suggesting that changing terminology alone would do little to improve understanding, particularly for some population groups. Explicit descriptions may be more effective.

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.

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.

Patients' preferences for GP consultation for perceived cancer risk in primary care: a discrete choice experiment.

BACKGROUND: Contacting a doctor for advice when experiencing a potential cancer symptom is an important step in early diagnosis, but barriers to consultation are commonly reported. Understanding barriers to consulting in primary care within the cancer context provides opportunities to improve earlier diagnosis of cancer AIM: To investigate patients' GP consultation preferences when presented with a potential cancer symptom, and to describe whether these preferences are mediated by variable levels of cancer risk. DESIGN AND SETTING: A UK-wide online survey of adults ≥50 years old, using quota sampling to reflect general population characteristics. METHOD: A discrete choice experiment examined participants' preferences for primary care consultation for three cancer symptom scenarios: risk level not mentioned, risk designated as 'low', or risk designated as 'high'. Scenarios based on length of consultation, time to getting an appointment, convenience, choice of GP, and GP listening skills were presented in a self-completed online questionnaire. RESULTS: A total of 9616 observations were obtained from 601 participants. Participants expressed preferences for doctors with better listening skills, the ability to see a GP of their choice, and shorter waiting times. These findings were the same across risk conditions and demographic groups. Participants were willing to wait an extra 3.5 weeks for an appointment with a doctor with good/very good listening skills (versus very poor listening skills) and an extra week for an appointment with a GP of their choice (versus any GP). CONCLUSION: Patient decisions about help seeking seem to be particularly influenced by the anticipated listening skills of doctors. Improving doctors' communication skills may in the longer term encourage people to seek prompt medical help when they experience a cancer symptom.

A cross-sectional survey assessing factors associated with reading cancer screening information: previous screening behaviour, demographics and decision-making style.

BACKGROUND: There is broad agreement that cancer screening invitees should know the risks and benefits of testing before deciding whether to participate. In organised screening programmes, a primary method of relaying this information is via leaflets provided at the time of invitation. Little is known about why individuals do not engage with this information. This study assessed factors associated with reading information leaflets provided by the three cancer screening programmes in England. METHODS: A cross-sectional survey asked screening-eligible members of the general population in England about the following predictor variables: uptake of previous screening invitations, demographic characteristics, and 'decision-making styles' (i.e. the extent to which participants tended to make decisions in a way that was avoidant, rational, intuitive, spontaneous, or dependent). The primary outcome measures were the amount of the leaflet that participants reported having read at their most recent invitation, for any of the three programmes for which they were eligible. Associations between these outcomes and predictor variables were assessed using binary or ordinal logistic regression. RESULTS: After exclusions, data from 275, 309, and 556 participants were analysed in relation to the breast, cervical, and bowel screening programmes, respectively. Notable relationships included associations between regularity of screening uptake and reading (more of) the information leaflets for all programmes (e.g. odds ratio: 0.16 for participants who never/very rarely attended breast screening vs. those who always attended previously; p = .009). Higher rational decision-making scores were associated with reading more of the cervical and bowel screening leaflets (OR: 1.13, p < .0005 and OR: 1.11, p = .045, respectively). Information engagement was also higher for White British participants compared with other ethnic groups for breast (OR: 3.28, p = .008) and bowel (OR: 2.58, p = .015) information; an opposite relationship was observed for older participants (OR: 0.96, p = .048; OR: 0.92, p = .029). CONCLUSIONS: Interventions that increase screening uptake may also increase subsequent engagement with information. Future research could investigate how to improve engagement at initial invitations. There may also be scope to reduce barriers to accessing non-English information and alternative communication strategies may benefit participants who are less inclined to weigh up advantages and disadvantages as part of their decision-making.

Patient factors associated with non-attendance at colonoscopy after a positive screening faecal occult blood test.

Background Screening participants with abnormal faecal occult blood test results who do not attend further testing are at high risk of colorectal cancer, yet little is known about their reasons for non-attendance. Methods We conducted a medical record review of 170 patients from two English Bowel Cancer Screening Programme centres who had abnormal guaiac faecal occult blood test screening tests between November 2011 and April 2013 but did not undergo colonoscopy. Using information from patient records, we coded and categorized reasons for non-attendance. Results Of the 170 patients, 82 were eligible for review, of whom 66 had at least one recorded reason for lack of colonoscopy follow-up. Reasons fell into seven main categories: (i) other commitments, (ii) unwillingness to have the test, (iii) a feeling that the faecal occult blood test result was a false positive, (iv) another health issue taking priority, (v) failing to complete bowel preparation, (vi) practical barriers (e.g. lack of transport), and (vii) having had or planning colonoscopy elsewhere. The most common single reasons were unwillingness to have a colonoscopy and being away. Conclusions We identify a range of apparent reasons for colonoscopy non-attendance after a positive faecal occult blood test screening. Education regarding the interpretation of guaiac faecal occult blood test findings, offer of alternative confirmatory test options, and flexibility in the timing or location of subsequent testing might decrease non-attendance of diagnostic testing following positive faecal occult blood test.

Patient experience of CT colonography and colonoscopy after fecal occult blood test in a national screening programme.

OBJECTIVE: To investigate patient experience of CT colonography (CTC) and colonoscopy in a national screening programme. METHODS: Retrospective analysis of patient experience postal questionnaires. We included screenees from a fecal occult blood test (FOBt) based screening programme, where CTC was performed when colonoscopy was incomplete or deemed unsuitable. We analyzed questionnaire responses concerning communication of test risks, test-related discomfort and post-test pain, as well as complications. CTC and colonoscopy responses were compared using multilevel logistic regression. RESULTS: Of 67,114 subjects identified, 52,805 (79 %) responded. Understanding of test risks was lower for CTC (1712/1970 = 86.9 %) than colonoscopy (48783/50975 = 95.7 %, p < 0.0001). Overall, a slightly greater proportion of screenees found CTC unexpectedly uncomfortable (506/1970 = 25.7 %) than colonoscopy (10,705/50,975 = 21.0 %, p < 0.0001). CTC was tolerated well as a completion procedure for failed colonoscopy (unexpected discomfort; CTC = 26.3 %: colonoscopy = 57.0 %, p < 0.001). Post-procedural pain was equally common (CTC: 288/1970,14.6 %, colonoscopy: 7544/50,975,14.8 %; p = 0.55). Adverse event rates were similar in both groups (CTC: 20/2947 = 1.2 %; colonoscopy: 683/64,312 = 1.1 %), but generally less serious with CTC. CONCLUSIONS: Even though CTC was reserved for individuals either unsuitable for or unable to complete colonoscopy, we found only small differences in test-related discomfort. CTC was well tolerated as a completion procedure and was extremely safe. CTC can be delivered across a national screening programme with high patient satisfaction. KEY POINTS: • High patient satisfaction at CTC is deliverable across a national screening programme. • Patients who cannot tolerate screening colonoscopy are likely to find CTC acceptable. • CTC is extremely safe; complications are rare and almost never serious. • Patients may require more detailed information regarding the expected discomfort of CTC.

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 χ2 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 η2=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 η2=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.

Common methods of measuring 'informed choice' in screening participation: Challenges and future directions.

There is general agreement among public health practitioners, academics, and policymakers that people offered health screening tests should be able to make informed choices about whether to accept. Robust measures are necessary in order to gauge the extent to which informed choice is achieved in practice and whether efforts to improve it have succeeded. This review aims to add to the literature on how to improve methods of measuring informed choice. We discuss and critique commonly-used approaches and outline possible alternative methods that might address the issues identified. We explore the challenges of defining what information should be provided about screening and hence understood by service users, appraise the use of 'thresholds' to define e.g. positive attitudes towards screening, and describe problems inherent in conceptualising 'informed choice' as a single dichotomous outcome that either does or does not occur. Suggestions for future research include providing greater detail on why particular aspects of screening information were considered important, analysing knowledge and attitude measures at an ordinal or continuous level (avoiding problematic decisions about dichotomising data in order to set thresholds), and reconceptualising informed choice as a multifactorial set of outcomes, rather than a unitary one.

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. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number registry, ISRCTN85697880 , prospectively registered on 25/04/2013.

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

OBJECTIVES: To determine how 'overdiagnosis' is currently conceptualised among adults in the 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 aimed 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 and equal numbers of men and women. 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 (ie, 'too many tests'), treatment (eg, 'overtreatment') and patient psychology (eg, '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.