Women’s experiences of personalised risk assessments and risk stratification focused around two main themes, each containing several subthemes;

(i)

Acceptability, Engagement and Reactions to Personalised Risk Estimates and Stratification

(ii)

Implications on Risk Management and Future Health.

Theme 1: Acceptability, engagement and reactions to personalised risk estimates and stratificationSubtheme 1: Engaging with studies

Women appreciated the invitation to receive a personalised risk estimate and the future health information it provided (McWilliams et al. 2023). They viewed this as empowering, giving them a greater sense of control over their future health;

‘If you don’t know what your risk is, you could just carry on and, you know, just end up getting something like breast cancer and it be a complete shock to you.’ (Erica, High) (McWilliams et al. 2023)

For some women, study participation was emotionally triggering, reminding them of past family experiences of the disease, as well as future cancer risk (McWilliams et al. 2023). Waiting for results did not appear to negatively impact participants, with many reporting that they did not think about their BC risk whilst awaiting results (McWilliams et al. 2023).

Subtheme 2: Women’s reactions to results – moderate and high risk

Risk assessments were returned to participants through letters and face-to-face or phone consultations. MyPebs study results, sent by letter and followed by phone calls, were received positively and helped understanding. It also provided an opportunity to ask questions and advice regarding their future risk. Some women found it helpful to know their result before this consultation, as it allowed them to psychologically prepare and gave time to process the information. However, others found it emotionally difficult to find out their high- or very high-risk status without HCP support, quoting:

‘I think it would have been better, less of a shock, to have the two things the other way round, so to speak to a doctor and have any questions answered immediately. (Gillian, Very High) (McWilliams et al. 2026).

Prompt HCP contact was beneficial to women after receiving results, particularly for those assessed as being at high- or very high-risk. One high-risk woman, upon opening her results letter, had difficulties processing her results due to emotional triggers and subsequent fears about future health. This was dissipated once she ‘spoke to the [HCP] about it’ after which she ‘was absolutely fine’, however, this was following ‘two weeks mulling it over at home and perhaps blowing things out of proportion’ (Ruby, High) (McWilliams et al. 2023).

Misunderstanding arose in one case where high-risk results were communicated by letter without follow-up from a HCP. The participant reported believing she ‘was going to get cancer in the next five years’ (Anne-Marie, Very-High) (McWilliams et al. 2026).

Subtheme 3: Women’s reactions to results – low and average risk

For low- or average-risk women, HCP contact post-results did not seem as critical, with one participant stating her hospital visit to receive an average-risk result as unnecessary; ‘I came specifically for something that wasn’t a big deal’ (Armelle, Average) (McWilliams et al. 2026). This was mirrored for participants where the results aligned with what they expected and were not “out of the blue” (McWilliams et al. 2023). Many who received an assessment categorising them as low-risk did not recall specific details contained within their letter, however remembered that the results were ‘good news’ (McWilliams et al. 2026).

Subtheme 4: Format of risk communication (letters)

Detailed letters were appreciated by several participants as it allowed them to go back to the results when they needed, aiding in understanding –

‘I read through the rest of it, put it down and went back to it again later on, I took it in a bit more, and I thought, oh right, okay, I can see why I’m falling into that [high-risk category]’ (Faye, High) (McWilliams et al. 2023).

Letter structure and content was reported as an important factor for both retention of knowledge and psychological impact of results. Presenting information in different formats (e.g. statistical presentation of risk, infographics) was helpful for women, especially when going on to discuss their risk with a HCP, which reduced temporary psychological distress (McWilliams et al. 2023). The framing of the impact of modifiable and non-modifiable risk factors was triggering for some women, leading to disempowerment and the feeling of being judged;

“The fact that I’d not had children till I was a bit older, […] knowing that risk factor isn’t very much help to me really, ‘cause there’s nothing I can do about it.” (Anita, Moderate) (McWilliams et al. 2023).

Subtheme 5: Prior assumptions of risk

Prior assumption of risk tended to influence the experience of receiving a personalised risk assessment, shaping emotional reactions and interpretation of results. Risk assessments were considered the most reassuring when it matched a woman’s prior expectation of risk, especially when this was low- or average-risk. Mostly this tracked with a woman’s lived experience of cancer, however incongruity was noted when a woman’s actual risk, usually lower, did not align with a high-perceived risk due to family history. One woman, assessed as low-risk, did not feel that she could incorporate her result into her health narrative due to a previous cancer death in the family (McWilliams et al. 2023).

‘…But I still, probably in my mind think, well surely that’s not correct. And I should just accept it, shouldn’t I, but I think because having gone through losing family members...’ (Hannah, Low) (McWilliams et al. 2023).

Prior risk assumptions fed into women’s belief in their results, particularly when they saw inconsistencies between lived experiences and HCP advice, or between HCP advice and risk assessment results. This was the case for one participant, who received a high-risk assessment, despite the HCP being reassuring about the diagnoses of BC in the family being at a later age (McWilliams et al. 2026). Another participant disregarded her results due family members being diagnosed with BC despite practicing the healthy lifestyle guidelines cited in her results letter (McWilliams et al. 2023, 2026).

Subtheme 6: Belief in results

Belief in results tracked with trust in the HCP providing their risk assessment, and having a pre-existing relationship with the HCP was highly appreciated. Furthermore, this facilitated acceptance of results and gave women more confidence in advice regarding risk management (McWilliams et al. 2026). When discussing the option of receiving less frequent screening after a low- or average risk assessment, one woman quoted:

‘...if the NHS feel confident in giving that advice then I would feel confident in taking because you are a trusted supplier of messages’ (McWilliams et al. 2021).

The need for women’s trust in HCPs is further highlighted by a participant who was given her result by her primary care doctor, who was unable to explain why she had received a very high-risk assessment. This led to an upsetting experience, and her questioning whether she believed her result (McWilliams et al. 2026). Women were also left unsettled when thinking about how their HCP may react to their risk assessment, leading to feeling alone when considering risk management options. One woman thought her doctor would judge her for her high-risk result, and was fearful she’d be told to ‘go away and lose some weight’, rather than being prescribed chemoprevention, as desired (McWilliams et al. 2023).

Theme 2: Implications for risk management & future health

Women receiving a personalised risk estimate described it having a favourable impact on views on future health and autonomy. Some women felt it was their duty to take responsibility for their own health, and felt being able to access risk personalisation would aid in this;

‘…knowledge is power and, you know, we all need to take responsibility for our own health and if we know in advance then we can deal with it’ (Abigail, Average) (Aldila et al. 2024).

Subtheme 1: Lower-risk results

Women who were low- or average-risk were left with a reassuring outlook on future health, and was quoted as being ‘one less thing to worry about’ (McWilliams et al. 2023). One participant admitted to feeling more comfortable taking HRT now that she knew that her BC risk was low, and that the medication would not be adding additional risk to an already increased risk (McWilliams et al. 2021).

Many with a low risk felt that although this was comparatively lower than others, they would remain vigilant, as they knew that low risk does not equal no risk:

‘It could happen at any time so it’s not that I’m never going to get it, it’s just that I’m at, sort of, the low-risk end of the scale’ (McWilliams et al. 2021).

When discussing the option of being offered low-risk screening, with longer intervals compared to standard NHSBSP (i.e. 5-yearly, compared to 3-yearly as per NHSBSP), women were of mixed opinions, stating that choice would be a major factor in acceptability. Many viewed the longer period between screening as worrisome, as this is ‘where things can go awry’ (Constance, Low), however some women were more accepting due to altruistic reasons, citing that resources being allocated to those at higher risk would be important;

“The fact that I’m low-risk, so if they said to me, right, you’re not having any more mammograms, and I know that I’m lowest risk, then I’m quite happy with that because then it frees up NHS money for somebody who’s younger that, perhaps, does need it.” (Tracey, Low) (McWilliams et al. 2026).

Subtheme 2: Screening intervals

Women may view this more favourably if given the option to extend their screening interval or delay screening, with the ability to return to regular screening if desired. (McWilliams et al. 2021):

‘If I was given the choice and made my own decision based on more accurate details and facts and then that would be my decision, rather than every three years, then I’d be happier with that than just being told ‘you’re in that category, we’re going for every five years’ (McWilliams et al. 2021).

As cancer communication often emphasises the benefits of early detection, women expressed a desire for clear, evidence-based guidelines and recommendations to be available on request; (McWilliams et al. 2026).

‘… the study has to come up with some really good evidence bases behind it to change the mindset of us all ‘cause at some point somebody said, it’s clinically right to do it at three years’. (Angela, Low) (McWilliams et al. 2026).

This was especially important to those who saw the longer screening intervals as a money-saving exercise, rather than evidence-based clinical practice (McWilliams et al. 2021).

Subtheme 3: Risk modifying behaviour

Women who received a personalised risk estimate were noted to be more open to discuss risk-modifiable factors with a HCP, such as weight and alcohol consumption (McWilliams et al. 2026). However, some women reported that these modifications were hard to maintain as part of a busy life, and were concerned about how these might influence future risk, if a healthy lifestyle was not adhered to (McWilliams et al. 2021). Women already practicing healthy living found conversations around risk-reducing medication (chemoprevention) helpful, as they felt it was something that could be managed (McWilliams et al. 2026).

Health care professionals results

HCP experiences of the implementation of personalised risk assessments centred on two themes, and contained several subthemes;

Theme 1: Professional and public buy-in

Across studies, HCPs viewed personalised risk assessments and risk-stratified screening positively. The approach was considered a logical method for tailoring screening, empowering women to make informed choices, and reducing over-screening of those at lower risk (Lapointe et al. 2023; Woof et al. 2021; Hawkins et al. 2022).

I think the idea is really good… We concentrate then on getting those ones that are high risk in. I mean, it makes sense, doesn’t it? (Superintendent Radiographer) (Woof et al. 2021)

Subtheme 1: Reactions to high-risk results

While high-risk results could cause anxiety, this was considered a normal reaction that could be mitigated by clear management pathways. Reactions were seen as linked to pre-existing anxiety rather than a barrier to implementation (Hawkins et al. 2022). Multidisciplinary meetings were emphasised as essential during early implementation to ensure safety and stakeholder input (Hawkins et al. 2022).

Subtheme 2: Guidelines

Current guidelines for managing increased risk were viewed as inconsistent and unclear, creating a disconnect in national implementation (French et al. 2022). Participants called for clear management guidelines, robust screening pathways, and improved digital infrastructure to support efficient implementation (Lapointe et al. 2023; Hawkins et al. 2022). Guidance on prescribing preventive medications was also lacking (French et al. 2022). Establishing information-sharing systems to access women’s risk factors across services was suggested to enhance efficiency (Hawkins et al. 2022).

Subtheme 3: Media coverage and public engagement

Public understanding and acceptance were recognised as critical, particularly if screening intervals were extended for low-risk women (Woof et al. 2021). Clear, balanced media communication was viewed as key to public trust. Engaging underrepresented populations (e.g. ethnic minorities, low socioeconomic status, those with learning difficulties) from the outset was seen as vital to prevent widening health inequalities (French et al. 2022; Hawkins et al. 2022).

“We need to be able to communicate […] to all the women […] not just the English-speaking ones…” (Mammography Manager) (Hawkins et al. 2022).

Subtheme 4: Disengagement from screening services

HCPs expressed concern that women receiving low- or average-risk results may use them as justification for disengaging with screening. Open discussions were recommended to address misconceptions and support women make informed health choices (French et al. 2022).

Theme 2: Capacity for implementation and future management

Many HCPs (screening managers, radiographers, risk consultations staff) thought risk-based screening would be feasible, seeing as many risk factors are already discussed during consultations.

“…it was part of the interview process that we do with every patient anyway and there’s always going to be extra questions...” (Mammography manager) (Hawkins et al. 2022).

Theme 1: Staffing needs

Adequate staffing was viewed as critical for successful integration (French et al. 2022; Hawkins et al. 2022). Screening services and family history clinics are already under pressure, raising concerns about increased workload and burnout (French et al. 2022; Hawkins et al. 2022). Additional specialist staff would be required, including helpline operators and breast screening nurses (Woof et al. 2021). It was highlighted that this should not be automatically deferred to general practitioners (GPs), due to limited capacity and a need for specialist care (Lapointe et al. 2023).

Short clinical appointments, particularly in the GP setting (average appointments lasting only 9.2 min) were not seen as sufficient for data collection or thorough risk discussion (French et al. 2022; Salisbury 2019). Dedicated staff members who can coordinate and facilitate women undergoing this process were seen as essential.

Consistent infrastructure and guidelines across services were also emphasised, as requirements for implementation would vastly differ between sites (Hawkins et al. 2022).

Theme 2: Confidence in results

Confidence in the accuracy and management of risk results was seen as vital, particularly for women classified as low risk who may receive less frequent screening. HCPs questioned how often reassessments should occur, given that risk factors (e.g., breast density, parity, family history) can change over time. A dedicated reassessment service was suggested (Woof et al. 2021).

‘I’m just thinking about those who might think, right, okay, I’ve got a low-risk, but what if circumstances change? And sometimes they might have breast cancer in the family and they might not know, because a lot of women don’t tell. (Cancer Screening Improvement Lead) (Woof et al. 2021).

Theme 3: Low-risk screening

HCPs were concerned that women might misinterpret low-risk results as “no risk,” leading to reduced engagement in screening or self-checking (Woof et al. 2021):

“… they might think, oh, I won’t get breast cancer because I’m such a low-risk..”. (Advanced Practitioner – Mammography) (Woof et al. 2021).

They stressed the need for clear, balanced communication to maintain vigilance. Some expressed discomfort with recommending longer screening intervals due to fear of missed interval cancers.

“I wouldn’t feel comfortable in telling somebody to have a longer gap in the screening if I wasn’t 100 per cent that [...] I personally wouldn’t be like, well, yeah, just leave it five years because I’d be really conscious of them developing a cancer in between. (Mammographer) (Woof et al. 2021)

Offering women choice regarding screening frequency was viewed as important to sustain reassurance and trust. However, information must be tailored to avoid overwhelm (Woof et al. 2021).