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Acceptability of de-intensified screening for women at low risk of breast cancer: a randomised online experimental survey

BMC Cancer volume 24, Article number: 1111 (2024) Cite this article

Abstract

Background

Risk-stratified approaches to breast screening show promise for increasing benefits and reducing harms. But the successful implementation of such an approach will rely on public acceptability. To date, research suggests that while increased screening for women at high risk will be acceptable, any de-intensification of screening for low-risk groups may be met with less enthusiasm. We report findings from a population-based survey of women in England, approaching the age of eligibility for breast screening, to compare the acceptability of current age-based screening with two hypothetical risk-adapted approaches for women at low risk of breast cancer.

Methods

An online survey of 1,579 women aged 40–49 with no personal experience of breast cancer or mammography. Participants were recruited via a market research panel, using target quotas for educational attainment and ethnic group, and were randomised to view information about (1) standard NHS age-based screening; (2) a later screening start age for low-risk women; or (3) a longer screening interval for low-risk women. Primary outcomes were cognitive, emotional, and global acceptability. ANOVAs and multiple regression were used to compare acceptability between groups and explore demographic and psychosocial factors associated with acceptability.

Results

All three screening approaches were judged to be acceptable on the single-item measure of global acceptability (mean score > 3 on a 5-point scale). Scores for all three measures of acceptability were significantly lower for the risk-adapted scenarios than for age-based screening. There were no differences between the two risk-adapted scenarios. In multivariable analysis, higher breast cancer knowledge was positively associated with cognitive and emotional acceptability of screening approach. Willingness to undergo personal risk assessment was not associated with experimental group.

Conclusion

We found no difference in the acceptability of later start age vs. longer screening intervals for women at low risk of breast cancer in a large sample of women who were screening naïve. Although acceptability of both risk-adapted scenarios was lower than for standard age-based screening, overall acceptability was reasonable. The positive associations between knowledge and both cognitive and emotional acceptability suggests clear and reassuring communication about the rationale for de-intensified screening may enhance acceptability.

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Background

While current breast screening programmes offer the same screening to everyone of a particular gender and age-group, risk-stratified breast screening (RSBS) would use risk prediction models, e.g., Tyrer Cuzick [1], to assess an individual’s risk, based on a wider range of factors, and adapt the screening offer accordingly. Women aged 50–70 in England are currently offered triennial breast screening, free on the National Health Service (NHS), but those at high or low risk may benefit from more or less screening, respectively. Evidence shows RSBS may improve the balance of screening benefit-to-harm [2,3,4,5]. This approach would entail inviting women for screening at different intervals or over varying age-ranges depending on their level of risk. Implementing RSBS would involve changes to the NHS breast screening programme (NHSBSP): changes should be acceptable to the screening-eligible public to avoid undermining confidence in the breast screening programme and ensure adherence to risk-based screening recommendations [6, 7].

Women notionally support the rationale for RSBS [8, 9]. However, survey studies consistently report that women consider proposals to increase screening for those at high risk more acceptable than less screening for those at low risk [8]. Specific to the UK, three surveys have found significant differences in support for intensified and de-intensified screening for high- and low-risk groups, respectively [10,11,12]. Consequently, there are concerns that the offer of less screening may engender a negative response from the public, as experienced in Australia and Wales with the implementation of extended cervical screening intervals for HPV-negative women [13, 14]. Nevertheless, most studies have focused on RSBS as a whole rather than exploring the acceptability of specific risk-stratification strategies and how they affect particular risk groups [15].

To date, two qualitative studies have explored UK women’s thoughts and feelings towards a de-intensified low-risk screening pathway. An interview study with women in receipt of low-risk estimates (< 2% 10-year risk) found that the prospect of extending screening intervals from 3 to 5-years was generally acceptable; however, participants highlighted the importance of shared decision-making and had concerns about the ’safety’ of longer screening intervals [15]. Similarly, qualitative findings show that women who had not participated in personal risk assessment (PRA) expressed support for de-intensified screening in principle. However, this was dependent on the accuracy of risk feedback and the clinical and psychological implications of being offered less frequent screening or over a shorter period [16]. The acceptability of de-intensified screening strategies for low-risk groups has yet to be quantified with a larger and more representative population-based sample [16, 17].

Informed decision-making may be key to the acceptability of RSBS, yet few survey studies have assessed women’s understanding of breast cancer and screening [18]. It is notable that levels of acceptability for de-intensified screening are higher in studies which provide participants with information about screening harms, e.g., risk of overdiagnosis and false positive results. For instance, a survey which outlined the need to improve the ratio of screening benefit-to-harm found 51% of participants would accept less screening [10] compared to 20% of those in a survey without such information [19]. Likewise, qualitative research suggests that women who acknowledge the risk of screening harm may be more accepting of de-intensified screening [16].

It is also known that women, especially those with experience of breast screening, have a high tolerance of screening-related harms [20, 21]. For example, many US women aged 40–49 and over 70 years continue to have screening despite recommendations that they may benefit from deferring or ceasing screening, respectively [22, 23]. Younger women, with less experience of screening, may be more amenable to revising their screening intentions than older age groups when informed about the balance of screening benefit-to-harm [21, 24]. For example, a meta-analysis investigating the effectiveness of decision aids on breast screening intentions found larger proportions of younger women (38–50 years) who would decide against or defer starting screening compared to older age-groups (69–89 years) for whom there was no effect on intentions to cease screening [23]. Similarly, qualitative research has found that de-intensified screening is perceived as more acceptable for ‘future generations’ rather than those already invested in breast screening programmes [15, 16, 25]. Hence, there is a need to minimise incongruence between breast screening experience and future RSBS approaches.

The influence of socio-demographic and psychosocial factors on women’s cognitions and feelings about age-based screening (ABS) are well-documented [26,27,28]. However, such influences may not translate to RSBS, so it is important to explore the impact of sociodemographic and psychosocial characteristics on the acceptability of this approach. In this respect, previous research is limited by the over-representation of highly educated women with Caucasian heritage [10, 11, 29]. As a better understanding of participant characteristics potentially associated with the acceptability of de-intensified screening is important for future communication and implementation strategies, research is required with more socially diverse populations.

The successful implementation of RSBS will also depend on high levels of acceptability for all stages of this screening approach [30]. Women in the UK have positive attitudes towards PRA [10, 11, 16]. Nevertheless, some women may anticipate the integration of RSBS and PRA more easily than others [16, 31]. It is important, therefore, to explore the acceptability of PRA with prior awareness of de-intensified screening strategies for women at low risk.

We aimed to address these gaps by conducting a large-scale survey of women in England, currently below the minimum age for NHS breast screening, to investigate how this population think and feel about the prospect of de-intensified screening for women at low risk as part of an RSBS approach. NHS age-based screening (ABS) was used as a comparator to quantify the relative acceptability of either an extended screening interval (from 3 to 5-years: ‘RSBS-intervals’) or a later screening start-age (from 50 to 55 years: ‘RSBS-start-age’). We hypothesised that participants would consider ABS more favourably than the RSBS conditions, and that extended screening intervals would be more acceptable than a later start-age [32, 33].

We also explored the associations between cognitive, psychosocial, and sociodemographic characteristics and acceptability of de-intensified screening. Higher acceptability scores were expected from participants with good health literacy and knowledge about breast cancer and screening. In line with the literature on women’s screening values and preferences [20, 21], higher perceived risk and severity [34, 35], breast cancer worry [36, 37], and personal experience of family and/or friends with the disease [27], were hypothesised to be negatively associated with acceptability scores. There were no a priori hypotheses about the impact of sociodemographic characteristics on acceptability outcomes.

Methods

Study design

An online experimental survey was conducted with participants randomised to information outlining one of three breast screening scenarios (Table 1). The study was pre-registered on Open Science Framework (OSF: https://osf.io/x9gcp/).

Table 1 Outline of breast screening conditions
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Study population and recruitment

The target population were women living in England and approaching age eligibility for breast screening (aged 40–49 years). The rationale for this age-range was to limit incongruence between the prospective acceptability of risk-adapted screening and concurrent breast screening experience, and mitigate breast screening endowment effects [42]. Therefore, women with mammography experience (e.g. to investigate a symptom) or a current/prior diagnosis of breast cancer, and those identified to be at high risk (e.g., BRCA1/2 carriers) were excluded. As the survey aims were specific to NHS England, women living in Scotland, Wales and North Ireland were ineligible. Those accessing the survey via a mobile phone were initially excluded as the infographics were better displayed on a larger screen. However, to reach the required sample size, this restriction was relaxed part-way through the recruitment process (see Fig. 1 for study flow).

Fig. 1
figure 1

Survey flow. *Participants who accessed the survey link from a mobile device were excluded from 23rd November until 12th December 2022. **The removal of the mobile phone exclusion criterion caused some technical issues with the survey link. Consequently, there were 2 days (14th to 15th December 2022) when the link was not permitting all participants to access the complete survey. †Quotas for ethnicity and highest educational attainment were relaxed 16th December to achieve the required sample size by 20th December 2022

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Participants were recruited from an online research panel, Dynata Global Ltd. (https://www.dynata.com/) with targets to reflect current ethnic and educational profiles of the population in England. Target quotas were derived from ONS Census 2021 data indicating that 15% and 34% of the population have ethnic minority backgrounds and higher education qualifications, respectively (https://www.ons.gov.uk/).

Based on prior research exploring the acceptability of de-intensified screening strategies [16, 32], small between-group differences in acceptability scores were expected for RSBS-intervals and RSBS-start-age. An a priori power analysis comparing group means for a one-way ANOVA with a small effect size (F = 0.10) and error probability of α = 0.05, estimated a minimum sample size of N = 1,095 with three equal sized groups (n = 365) to achieve 0.85 power. To ensure power for between-group comparisons and account for attrition, we aimed to recruit a minimum of N = 1,500 participants.

Survey procedure and materials

Survey templates were uploaded to Qualtrics XM (Version 2023, Provo, UT, USA) and are available in Additional file 1. The survey was developed for this study, and piloted to assess accessibility and comprehensibility.

All participants were asked to provide informed consent and were assessed for study eligibility. Those who did not consent or meet the eligibility and quota criteria were directed to an exit page thanking them for their interest and time (Fig. 1). Following baseline measures including sociodemographic and psychosocial characteristics, and knowledge of breast cancer and screening, all eligible participants were randomly assigned to one of three groups using Qualtrics’ randomisation function: (1) ABS, (2) RSBS-intervals, and (3) RSBS-start-age (Fig. 1).

All groups viewed an infographic outlining the balance of benefit-to-harm of NHS screening. The ABS group were then directed to a questionnaire designed to assess the acceptability of current NHS screening. Participants allocated to the RSBS conditions were shown information explaining why ABS may not benefit all women equally. This was followed by information explaining: (a) breast cancer risk factors and how these can be measured to estimate overall level of risk and, (b) why low-risk groups may benefit from less screening by reducing the risk of screening-related harm. Prior to completing their respective acceptability questionnaires, participants in RSBS-intervals and RSBS-start-age were directed to ladders of risk showing a range of possible screening intervals or start-ages across a spectrum of risk, respectively. Survey materials and infographics are available in Additional file 1.

To assess the impact of information exposures, all participants repeated the measure of knowledge of breast cancer and screening. Finally, participants were asked to consider the idea of combining risk information to estimate personal level of breast cancer risk and whether they would be willing to undergo PRA. The survey closed with information outlining the study aims and assuring participants that there are no imminent plans to change the NHSBSP.

Measures

Outcome measures

In line with a multidimensional conceptualisation of healthcare acceptability [43], questionnaire items were designed to reflect five of seven domains of the Theoretical Framework of Acceptability (TFA) that are most relevant to risk-adapted breast screening: affective attitude, intervention coherence, perceived effectiveness, ethicality and opportunity costs [43]. We drew on a previously published, though unvalidated measure [43], which we adapted for the breast screening context. Psychometric evaluation of the scales is reported in Additional file 2. We also included a single item assessing global acceptability, which has also been used in previous studies [43].

Cognitive and emotional acceptability items used 5-point Likert response scales: ‘strongly disagree’, ‘disagree’, ‘neither disagree nor agree’, ‘agree’ to ‘strongly agree’. Cognitive acceptability was measured by six items (Cronbach’s α = 0.87) assessing whether respondents perceived the breast screening approach to be; ‘reassuring’, [41] ‘a good idea’, with ‘more benefit than cost’, and ‘makes sense’ [20, 37], whether the screening approach would ‘motivate some women to pay for supplementary breast screening, [12, 32] and whether ‘these were perceived as a fair allocation of NHS resources’. [44] Higher scores on this subscale (range 6–30) indicates higher cognitive acceptability.

Emotional acceptability was assessed by two items (Cronbach’s α = 0.78) measuring the extent to which their breast screening condition made participants feel anxious [45,46,47] or angry [13, 48, 49]. Higher scores on this subscale (range 2–10) indicate higher emotional acceptability (i.e. less anxiety and anger).

Global acceptability was assessed by a 5-point Likert response scale (range 1–5) measuring the extent to which participants perceived their respective breast screening conditions acceptable: ‘completely unacceptable’, ‘unacceptable’, ‘neither unacceptable nor acceptable’, ‘acceptable’, and ‘completely acceptable’ [50].

Attitudes towards PRA were assessed by asking participants what they thought of the ‘idea of using information like age, family history, reproductive history, lifestyle factors, weight and the results from genetic tests to identify women at very high or low risk of developing breast cancer’, and indicate their willingness to undergo PRA if the NHS were to offer this [10].

Covariates

Participants were asked to report their age, ethnicity, highest educational qualification, and marital status.

Participants were asked about their intentions to attend breast screening when they reached 50 years and their perceived risk of developing breast cancer (relative to other women their age) [51, 52]. Perceived severity was measured by asking participants to specify to what extent they agreed that “breast cancer would be more serious than other diseases” [35]. As anxiety may be a reason why women find a low-risk pathway unacceptable [10, 15, 16], participants were asked to rate the intensity and frequency of breast cancer worry [53]. A multi-response item assessed whether participants had experienced breast cancer in a close family member, partner, close friend, other friend/ colleague [54].

As health literacy may influence the prospective acceptability of breast screening, two items assessed subjective understanding of professional health advice and information [55]. To assess knowledge of breast cancer and screening, participants were presented with five statements [56] (Table 2), and asked to indicate whether they considered each statement to be ’true ‘, ’false‘ or ’not sure’ with responses coded 1 or 0 for correct and incorrect /unsure responses, respectively (score range 0–5).

Table 2 Change in knowledge and awareness scores between baseline and post-exposure
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Full details of survey measures and codes are available on OSF.

Analyses

Descriptive statistics were used to analyse participant characteristics

To assess how acceptable participants considered ABS and the two RSBS conditions, between-group differences in responses to individual TFA items were analysed by one-way ANOVAs. Univariate ANOVAs were also conducted to test between-group differences for cognitive, emotional, and global acceptability scores. Differences in knowledge of breast cancer and screening between baseline and post-exposure were analysed with paired sample t-tests. All post-hoc between-group comparisons were Bonferroni corrected to mitigate Type 1 error (α/n 0.05/3, p = 0.02).

Multivariable regression modelling adjusted for experimental group was used to explore the influence of sociodemographic, psychosocial, and cognitive characteristics on cognitive and emotional acceptability. The selection of variables to include in the multivariable models was based on a priori hypotheses. Multiple logistic regression was used to analyse between-group differences in willingness to engage with PRA by experimental group, sociodemographic, psychosocial and cognitive characteristics. The final logistic regression model was adjusted for cognitive and emotional acceptability scores to explore whether these were associated with PRA intentions.

Unless indicated, participants who selected ‘prefer not to say’ were coded as missing for multivariable analyses, reducing the analytical sample from N = 1579 to N = 1573. Given the narrow age-range of participants (40–49 years), the average age was used to impute the age of those who chose not to give their current age [57]. All analyses were carried out in SPSS version 29.0 (IBM SPSS, Armonk, NY: IBM Corp).

Results

Participants

Out of 3,836 women who accessed the survey link, 80.4% (n = 3,085 including n = 150 who participated in the pilot study and excluding n = 751 who accessed the survey link by mobile phone or had technical problems doing so) started the survey. Of those, 5.3% did not give consent (n = 163) and 28.6% (n = 881) did not meet the eligibility criteria (Fig. 1). After excluding duplicates (n = 22), 2,019 participants met the study inclusion criteria, of whom 6.7% (n = 141) were excluded due to full quotas. A further 11.6% (n = 234) dropped out prior to randomisation. Consequently, 1,644 were randomised, of whom 4.0% (n = 65) were excluded due to: failed attention checks (n = 30), completing the survey too slowly (> 60 min; n = 8) or rapidly (< 3 min; n = 20), and incomplete responses (n = 7). The analytical sample included N = 1,579 participants.

Participants were aged between 40 and 49 years (mean age 44.6 years) and nearly half the sample were educated to degree level (45.9%), and 90.0% were from white ethnic backgrounds. Of the 9.7% (n = 152) of participants from minority ethnic groups, 66.4% (n = 101) were educated to degree level. Consequently, only 5.8% (n = 49) of participants with low or medium educational attainment were of ethnic minority heritage rather than the target of 10.5%. A majority (71.6%) were married/in a partnership (Table 3).

Table 3 Characteristics of all participants and by experimental group
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An overwhelming majority of participants (93.4%) expressed positive intentions to attend breast screening when eligible. Nearly half (46.3%) considered their breast cancer risk to be the same as other women in their age group, and 15.9% were uncertain. 67.1% of participants believed that breast cancer is more serious than other diseases. Nearly half (46.0%) reported moderate levels of worry about breast cancer, and a similar proportion (43.0%) had no personal experience of family or friends with breast cancer (Table 3).

Most participants (82.8%) reported good levels of health literacy in terms of easily understanding health professional advice and information. Baseline levels of knowledge about breast cancer and screening were moderate (Table 2). However, paired sample t-tests demonstrated significant gains in mean knowledge scores between baseline (2.61 out of a possible 5) and follow-up (2.99); t(1,578) = 14.6, p < 0.001. Specifically, there were improvements in knowledge about the heterogeneity of breast cancer, risk of overdiagnosis, and the severity of breast cancer (p < 0.001). However, there were no pre-post differences in understanding of the purpose of breast screening (Table 2).

Univariate analyses for theoretical framework of acceptability (TFA) items by experimental group

There were robust between-group differences (p < 0.001) for all acceptability items except the need for supplementary screening (see Additional file 3: Table 3.1). Mean cognitive acceptability scores were significantly higher for ABS than either of the RSBS conditions (Brown-Forsythe F(2,1413.34) 189.0, p < 0.001), but there were no differences between RSBS-intervals and RSBS-start-age groups (Table 4).

Table 4 Mean cognitive, emotional, and global acceptability scores by experimental group with post-hoc Bonferroni comparisons
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There were also higher emotional acceptability scores for ABS than the RSBS conditions (F(2,1576) 93.9, p < 0.001), but no significant differences between RSBS-intervals and RSBS-start-age (p = 1.00). Similarly, the global acceptability of ABS was higher than both the RSBS conditions (Brown-Forsythe F(2,1386.3) 184.9, p < 0.001), with no differences between the RSBS conditions (p = 1.00).

Factors associated with cognitive and emotional acceptability

In multivariable regression analyses, experimental group explained the largest proportion of variance in cognitive (19%) and emotional (11%) acceptability scores (Table 5). Compared to ABS, allocation to RSBS-intervals and RSBS-start age was independently associated with lower cognitive and emotional acceptability scores (p < 0.001) despite the inclusion of all covariates.

Table 5 Cognitive and emotional acceptability regression coefficients adjusted for experimental group, sociodemographic, psychosocial, and cognitive factors
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The addition of sociodemographic characteristics including age, highest educational qualification, ethnic background, and marital status, explained a significant, albeit small, proportion of the variance in cognitive acceptability scores only. This was largely due to negative associations between highest and medium levels of education and cognitive acceptability scores (p < 0.01).

The inclusion of psychosocial characteristics explained 2% and 11% of the variance in cognitive and emotional acceptability scores, respectively (Table 5). Compared to low perceived risk, average and uncertain risk perceptions were associated with lower cognitive and emotional acceptability (p < 0.01). High levels of breast cancer worry were also associated with lower cognitive acceptability (p < 0.05). By contrast, both high and moderate levels of worry were associated with lower emotional acceptability (p < 0.001). High (p < 0.001) and uncertain (p < 0.01) perceived severity of breast cancer were associated with lower emotional acceptability only.

Good health literacy and knowledge scores at follow-up were associated with higher cognitive and emotional acceptability (p < 0.001). See Additional file 3: Table 3.2. and 3.3 for full details of multivariable regression models.

Willingness to engage with PRA

Compared to 87.8% allocated to ABS, fewer participants in RSBS-intervals (79.3%) and RSBS-start-age (81.2%) would be willing to undergo PRA; χ2(2) 14.9, p < 0.001. A multivariable logistic regression model, adjusted for experimental group, sociodemographic, psychosocial, and cognitive characteristics, showed that participants in RSBS-intervals and RSBS-start-age were significantly less likely to engage with PRA compared to those in the ABS condition (odds ratio (OR): 0.5 (95% CI 0.4 to 0.7) and OR 0.6 (95% CI 0.04.08), By contrast, there were no significant differences between RSBS-intervals and RSBS-start-age. However, significance levels for such differences by experimental group were attenuated when adjusted for cognitive and emotional acceptability scores. See Additional file 3: Table 3.4 for full model details.

Discussion

This is the first population-level survey to assess the acceptability of de-intensified breast screening for women at low predicted risk as part of a RSBS approach. As participants had no experience of breast screening, their thoughts and feelings towards current NHS age-based breast screening (ABS) were used as a comparator to assess the acceptability of extending screening intervals from 3 to 5-years or deferring the start of screening from 50 to 55 years. As hypothesised, ABS was perceived to be more cognitively and emotionally acceptable than the two RSBS conditions. However, no differences in cognitive, emotional, and global acceptability were detected between the two RSBS conditions which suggests that a later screening start age and extending intervals would have similar levels of acceptability. That said, all three screening approaches were globally acceptable (mean score > 3 on a 5-point scale) and differences in mean scores for cognitive and emotional acceptability between ABS and both RSBS conditions were small which indicates only a small increase in acceptability of de-intensified screening would be required to bring acceptability in line with the current programme.

The demarcation between cognitive and emotional acceptability, revealed by exploratory factor analysis, offers insight into the multi-dimensionality of breast screening acceptability [43]. In terms of cognitive acceptability, the RSBS conditions were perceived to provide less reassurance and incur more costs than benefits compared to ABS. This is consistent with research identifying reassurance to be a motivator for breast screening attendance [27, 58] which, in turn, may be associated with women’s propensity to over-estimate the benefits of breast screening [21, 37, 59, 60]. Participants assigned to the ABS condition were more likely to understand and trust the rationale for this screening approach than those exposed to RSBS-intervals or RSBS-start-age. A greater proportion of participants in the ABS condition considered it to be a fair allocation of NHS resources than in the two de-intensified screening conditions. However, unlike some US and European findings [32, 61] there were no between-group differences in the perceived need for supplementary screening outside the NHS. This may be due to participants’ familiarity with free healthcare at point of need. Between-group differences in emotional acceptability scores indicated that participants felt that ABS would have less negative emotional impact than the de-intensified screening scenarios which is consistent with qualitative research exploring women’s emotional concerns about introducing a low-risk screening pathway [15, 16].

Experimental group accounted for the largest proportion of variance in both cognitive and emotional acceptability scores. Although there were no a priori hypotheses regarding the impact of socio-demographic characteristics on screening acceptability, it was perhaps surprising that participants with mid-to-high levels of educational attainment had lower cognitive acceptability scores, and further research is required to explore the relationship between educational level and the acceptability of RSBS approaches. There were no significant associations between socio-demographic characteristics and emotional acceptability which indicates that this sub-scale may be acting independently of cognitive acceptability in this regard.

Psychosocial factors explained differential proportions of variance for cognitive and emotional acceptability. This is consistent with the independent and interrelated roles of cognition and affect proposed by the Common Sense Model of Self-Regulation (CSM) [62] which underscores the theoretical conceptualisation of healthcare acceptability [43]. In particular, high levels of breast cancer worry were associated with lower levels cognitive and emotional acceptability. Both high and moderate worry were associated with lower emotional acceptability. Although we were unable to accept the hypothesis that high perceived risk would be associated with lower acceptability, participants with average and uncertain perceived risk of breast cancer reported lower cognitive and emotional acceptability compared with participants with low risk perceptions. However, perceived severity of breast cancer was associated with emotional acceptability but not cognitive acceptability. Strategies to enhance the acceptability of de-intensified screening should consider the interplay between cognitive and affective attitudes [43].

As our participants were under 50 years and screening naïve, the information provided in this study may have been their first exposure to breast screening information. The positive association between post-exposure knowledge scores and cognitive and emotional acceptability may be an indication that those who engaged most with the information had higher acceptability. This provides a promising signal that, at least in those with limited prior knowledge, provision of information may enhance acceptability. Furthermore this is consistent with findings that decision aids and information about breast screening may be more effective for women newly eligible for breast screening as the materials may be studied more intensively [56, 63, 64]. It will be interesting to explore whether this explanation holds with a longitudinal survey design comparing women not yet eligible for screening with an older population with breast screening experience.

Most participants were aware of the heterogenous nature of breast cancer, and a high proportion correctly identified that overdiagnosis, or the possibility that screening may detect cancers that would never become life-threatening. As numerous studies have found that women find it hard to understand that the diagnosis and treatment of all breast cancers may not be beneficial, [20, 37, 52], it is possible that responses to this item were based on participants’ awareness of the heterogeneity of breast cancer rather than overdiagnosis per se. Moreover, participants ‘correct’ identification of overdiagnosis is contradicted by the fact that two-thirds falsely believed that all breast cancers will cause illness and death without detection and treatment. Many participants falsely believed that breast screening prevents the development of breast cancer [65]. Although this may be a semantic issue (interpreted as preventing breast cancer deaths), it is also possible that participants called on their experience of being informed about the preventative purpose of cervical screening. Nevertheless, such beliefs about the purpose of breast screening have been found amongst participants with a range of breast screening experience [60, 66, 67]. It is possible, therefore, that strategies to clarify the purpose of breast screening could enhance the acceptability of de-intensified screening. As research has shown that incorrect lay beliefs, combined with endowment effects [42], may inhibit engagement with ‘updated’ breast screening information [37, 68, 69], such interventions should ideally be implemented before women reach the age of screening eligibility and are invested in breast screening programmes.

As all operational stages of an integrated RSBS programme will need to be considered acceptable, the positive relationship between the acceptability of RSBS and willingness to engage with PRA is encouraging. Interestingly, only cognitive acceptability of screening was associated with higher likelihood of undergoing PRA which suggests that women did not anticipate any negative psychological impact from this and may even see this as means of dispelling worry. [70, 71] Nevertheless, we did not include information about PRA procedures to identify women at low risk, e.g., initial mammography to determine breast density and/or polygenic risk tests [39], nor asked participants whether they would be comfortable with risk-feedback.

Strengths and limitations

The use of theoretically informed subscales of acceptability offers quantified insight into why de-intensified screening may be less acceptable than ABS. However, previously developed but unvalidated TFA-based items [50] were adapted for use in this study. As highlighted by Sekhon and colleagues, further pyschometric assessment of the generic measure is required [50] and it will also be important to investigate the validity and reliability of the two sub-scales of acceptability we derived from exploratory factor analysis. Similarly, items assessing knowledge were adapted from a decision-aid [56] rather than a validated and culturally appropriate measure, [37] and it is possible that they failed to capture participants’ understanding about breast cancer and screening.

The survey information was designed to reflect NHSBSP leaflets. [72] Given the relatively young age of participants, and the known limitations of written materials for communicating complex screening information, it is possible that interactive graphics or videos would have yielded different patterns of response. [73]

Due to the use of an online panel for the recruitment of study participants, we were not able to analyse response rates, compare the characteristics of participants with non-participants, nor explore reasons for not taking part. [19] Furthermore, online panels may introduce response bias as participants’ motivation to both subscribe to these and participate in breast screening research may be distinct from the wider population. Not least, there was over-representation of participants from white ethnic backgrounds and educated to degree level. It is possible, therefore, that our sample may not represent the ethnic and educational diversity of women in their 40’s, living in England, and not yet eligible for NHS breast screening.

Conclusions

Women found de-intensified screening via 5-year screening intervals or a later start-age of 55 years to be broadly acceptable. Nevertheless, those presented with ABS consistently reported higher acceptability than those presented with the de-intensified screening scenarios. In terms of cognitive acceptability, women perceived de-intensified screening less effective, reassuring, trustworthy and fair than ABS. To ensure the acceptability of RSBS, we need to research ways to: enhance understanding about breast cancer, clarify the rationale for offering less screening for women at low predicted risk (e.g., by emphasising the potential harms of screening for this risk group), and reassure them that this would be a ‘safe’ and equitable use of NHS resources. As emotional acceptability may operate both independently and interdependently with cognitive acceptability, interventions targeting negative emotions evoked by de-intensified screening may be required to allay worry about the severity of breast cancer.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. All the data is stored by King’s College London in accordance with the Data Protection Act 2018.

Abbreviations

ABS:

Age-based breast screening

CSM:

Common Sense Model of Self-regulation

HPV:

Human papillomavirus

NHS:

National Health Service

NHSBSP:

National Health Service Breast Screening Programme

OSF:

Open Science Framework

PRA:

Personal risk assessment

RSBS:

Risk-stratified breast screening

TFA:

Theoretical Framework of Acceptability

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Acknowledgements

We are grateful to Breast Cancer Now for funding this research, participants who took part in this research, and the patient and public involvement members who contributed to survey design.

Funding

This research was funded by Breast Cancer Now, grant number 2018BCNNovPhD12651.

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Authors and Affiliations

  1. Cancer Prevention Group, Faculty of Life Sciences & Medicine, King’s College London, Guy’s Campus, Great Maze Pond, London, SE1 1UL, UK

    Charlotte Kelley-Jones, Suzanne E. Scott & Jo Waller

  2. Wolfson Institute of Population Health, Queen Mary University of London, Charterhouse Square, London, EC1M 6BQ, UK

    Suzanne E. Scott & Jo Waller

  3. c/o Professor J. Waller, Queen Mary University of London, Charterhouse Square, London, EC1M 6BQ, UK

    Charlotte Kelley-Jones

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Contributions

Conceptualisation, C.K-J, S.S., and J.W.; methodology, C.K-J, S.S., and J.W.; analysis C.K-J.; writing-original draft preparation, C.K-J., writing-review and editing, C.K-J, S.S., and J.W.; supervision, J.W. and S.S.; project administration, C.K-J; funding acquisition, J.W. All authors have read and agreed to this version of the manuscript.

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Correspondence to Charlotte Kelley-Jones.

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The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by King’s College London’s Biomedical & Health Sciences, Dentistry, Medicine, and Natural & Mathematical Sciences Research Ethics Panel (Ref: LRS-21/22-33339). Informed consent was obtained from all participants involved in the study.

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Kelley-Jones, C., Scott, S.E. & Waller, J. Acceptability of de-intensified screening for women at low risk of breast cancer: a randomised online experimental survey. BMC Cancer 24, 1111 (2024). https://doi.org/10.1186/s12885-024-12847-w

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