What do women think about having received their breast cancer risk as part of a risk-stratified NHS Breast Screening Programme? A qualitative study

In total, 346 women were invited to participate in an interview (145 low risk, 103 average risk, 53 moderate-risk and 45 high risk). Of 44 women who initially registered interest by calling or emailing the researchers, 40 took part in an interview (lasting from 23–79 min; median length 44 min). The average number of days from risk feedback being sent and date of interview for each risk group was: low, 61 days; average, 48 days; moderate, 250 days and high, 256 days. Women were aged 47–71 years (median 58.5), generally living in less deprived areas (based on IMD decile) and mainly reported having White British/Irish ethnicity, see Table 1. The sample had higher median IMD deciles and a greater proportion of women identifying as White British/Irish (90% versus 85% invited) relative to those invited (median IMD decile 8.5 versus 7 invited; Appendix 4). Two women received a risk estimate that included a PRS; one woman had not attended her routine mammogram therefore, her risk was calculated without mammographic density. Four moderate/high-risk participants had previously received risk estimates at genetic or family history clinics. Of 21 women with moderate or high risk, eight attended appointments with a HCP to discuss their risk; two of these were arranged after participating in this study.

Table 1 Characteristics of women in the sample.

The analysis produced two themes, (1) From risk expectations to what’s my health future story? and (2) Trying to be a good (woman) citizen. Quotes are presented with pseudonyms for participants and their risk category. For example, (Josephine, Low) indicates the woman received a low-risk estimate.

Theme 1: from risk expectations to what’s my future health story?

Women spoke about their experience of BC-Predict and receiving breast cancer risk information based on pre-existing expectations about their personal risk. Their accounts centred on viewing breast cancer risk information as something that might affect their future. These pre-existing risk appraisals largely influenced how women experienced the process of risk assessment in BC-Predict, how they reacted emotionally, and how they valued the information they received. They were used to consider whether the way in which it was communicated helped them integrate the risk with how they already viewed their health prior to BC-Predict and if it has changed what they think could lie ahead for them.

‘I don’t worry about it, but I also can’t fully relax because it is still higher than I thought it would be at this point’ Gayle, High

Overall, the invitation to have a breast cancer risk assessment was valued by the women where they recalled anticipating that personalised health information provided by BC-Predict would be empowering and help them feel in control of how their future health narrative might unfold.

‘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

Although it appeared acceptable and not worrisome to answer questions about breast cancer risk, this was a reflective period for some. During this time, these women paused to consider how cancer had already influenced their thoughts about their personal health story. Being asked about family history triggered memories of loved ones experiencing cancer-related ill health and death; information that has fed into their expectations about the risk they would receive. However, they felt able to park these thoughts until they received their feedback.

‘I found it okay. I suppose it did bring up some memories about my family, like my dad being ill, but not too upsetting, it’s just remembering it really. Yeah, it was fine, it was okay.’ Charlene, Low

This pause in considering how this risk information would impact their previously held health narrative continued during the time period between submitting the risk assessment questionnaire and the risk feedback arriving. Women generally reported not even thinking about their breast cancer risk or how it may impact their lives, including many forgetting about BC-Predict altogether. For instance, Jess (Low risk) took part in BC-Predict as breast cancer was on her mind due to friends experiencing the disease though due to her personal risk beliefs, she was able to wait for her feedback without any uncertainty.

‘I knew I wasn’t in a high-risk category, so really I think that’s why I have to take part, but out of my head, out of my mind, so there was no point where I was worried, waiting for any result.’ Jess, Low

On the few occasions where women recollected the moment they were about to find out their risk when opening the feedback letter as being nerve-wracking, they highlighted pre-existing worries about breast cancer underpinning how they remembered feeling at this point. These concerns linked with the view that although they may not feel particularly at risk, breast cancer is common and led some to feel unsure about how they would react to receiving ‘bad news’ (Sharon, Average) if their risk was higher than expected. However, women’s personal breast cancer risk appraisals also facilitated this stage of risk-stratified breast screening. For example, despite feeling apprehensive when the risk letter arrived, describing it as ‘a bit daunting’, Jennifer (Moderate-risk) went on to say the information was not completely out of the blue due to her family history of breast cancer although had viewed breast cancer risk as something that decreases with age. She therefore found the follow-up discussion with a HCP helpful and only after this point felt able to assimilate the risk information, identify with the estimate and understand how to manage its potential influence on her future health.

‘So it was nice to…when I spoke to the medical doctor on the phone following my involvement in this, it was nice to have the opportunity to discuss things with him, discuss things that had been on my mind, it was nice to talk about the risk, which was a surprise to me, it was nice to be able to discuss taking medication as a preventative measure and things that I’d never even thought about really.’ Jennifer, Moderate

Bethan (Average risk) was also nervous to receive her risk, perceiving her family history of prostate cancer as increasing breast cancer risk and viewing the information contained in the letter as having potential long-term implications for her health. She was therefore particularly relieved to receive average-risk feedback.

‘…I would have had to open it, but it would have been when I had plucked up enough courage to open it, because I’m expecting something to be said in that letter that will affect my life.’ Bethan, Average

Except for Bethan above, other women who received average-risk feedback thought they would fall within this category and thus felt reassured as their letter confirmed what they already thought. This was echoed by the women who received a low-risk category for the most part. The information was therefore viewed positively and considered as one less thing to think about with how they view their health in the coming years. However, despite viewing low risk as a favourable risk prediction, the emotive nature of experiencing cancer-related family death is at odds with how Hannah (Low risk) felt about her ongoing threat of breast cancer. As the risk category conflicted with her personal risk appraisal, this led her to feel unable to incorporate the BC-Predict information into her pre-existing health narrative.

‘…it says; ‘please remember that 98 per cent of women in your risk group will not develop the disease within the next ten years.’ So that was nice to read because I thought I was a lot higher risk. So it was good to read that. 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, well you just know that there’s more chance of, well I think there’s more risk… Hannah, Low

Meanwhile, when risk feedback was incongruent with expectations and women received moderate or high risk, they recalled feeling initially alarmed as they thought it would be lower. This group of women, like Hannah above, also described the statistical information contained in their letter as comforting. This allowed them to consider the number of women in their risk category expected to receive a breast cancer diagnosis and found it reasonable for themselves. In these cases, having a physical copy of risk information was useful for iterative reading, helping to make sense of their risk feedback to manage what it means longer-term.

‘I was down as having high risk, so initially that was quite a shock to see that in black and white, but once I read into it, it was quite reassuring, and I think, I can’t remember the figures, but it’s something like, you’re in the high risk category, but this does mean that there’s an 8 in 10 chance of you not getting it […] 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, and let’s look at the figures, and let’s look at the actual chances.’ Faye, High

However, for other higher-risk women, the colour pink used to highlight risk categories appeared red leading to immediate thoughts of danger. The women interacted with the letter in a way to make sense of what the written information means, in addition to their prior judgements, for the trajectory of their breast health. Here, they pulled on other scenarios where red-ink highlights threats to try and work out how to position the risk they had been given within their health storyline. In these cases, like Wilma (High risk) below, it was difficult not to see this as frightening and may reduce the reassurance provided by statistics.

I think the…red, obviously, is, you know, literally a red flag, so it’s a little bit scary initially. But then the first statement is very clear, 80 to 92 per cent of women will not develop breast cancer. It’s a little bit contradictory in the way that it’s, sort of, a little bit alarming. Wilma, High

On the whole, coupled with advice about risk management, this feedback format (colour excepted) appeared especially helpful for women who subsequently discussed their risk with a HCP. Follow-up discussions helped women deal with the fleeting psychological distress associated with their unexpected risk results. Women used both the statistical information and discussion as ways to reduce the threat to their future health caused by this and in doing so, were able to reframe risk as a possibility rather than certainty. This resulted in little long-term emotional impact from having received risk feedback.

So, when I, you know obviously, got the result I didn’t expect, so actually to speak to somebody was quite reassuring […] I was concerned that it was going to preoccupy me, and I thought well, what’s the point in worrying about it, it might never happen.’ Olive, High

On two occasions, due to receiving risk feedback during the initial COVID-19 lockdown, higher-risk women wanted ‘the opportunity to talk further’ (Margaret, Moderate) but were unable to access a HCP follow-up appointment. For example, Mary (Moderate) could not recall anything in her letter about risk factors that might have prevented the risk being any higher. Both women recounted feeling unable to fully process their anxiety by themselves leading to lasting concerns about how to digest the information in a way that could enable them to move on from the emotion and think about how to mitigate their risk of being diagnosed with breast cancer.

‘I viewed this as bad news and it was unexpected and didn’t see it coming, that once you heard the bad news or read the bad news, everything else is a blur, I just didn’t read anything else […] I think it did say something about, if you have any concerns or anything, you can phone this number, and that was the reason I actually wanted to speak to somebody’ Mary, Moderate

Similarly, access to follow-up HCP support that was arranged quickly was especially important for Ruby (High risk) who experienced similar information processing difficulties due to the emotions triggered by receiving her risk by letter alone. The upset she remembers feeling led her to consider that she might be seriously ill in the future whilst waiting for a risk appointment, despite previously thinking she would not be at risk of breast cancer. Both her lack of congruence between her previous risk appraisal and BC-Predict risk category along with the related affective response dissipated following a discussion about her risk with the HCP.

‘But once I spoke to the [HCP] about it, it was absolutely fine because you were able to go through all the various information. But I think I’d probably have been less emotional about it, if I hadn’t had the two weeks mulling it over at home and perhaps blowing things out of proportion slightly in my head. But since then, well it’s not something that’s front of mind all of the time, if that makes sense’ Ruby, High

Mina (Moderate-risk) who did not arrange to have follow-up with a HCP, essentially disregards her risk citing that her family member affected by breast cancer practised the health behaviours listed in her BC-Predict letter but still received a breast cancer diagnosis. This was unique across the women’s accounts of their experiences. The information about health behaviours being protective against breast cancer provided with Mina’s risk estimate does not align with her lived experience and was therefore more difficult to consider as useful for integrating how her own risk feeds into her future health, a narrative she feels able to think about only if she is diagnosed in the future.

‘You’re not going to stop it coming. If it comes, it comes, and you deal with it then. […] For me has it altered my life knowing I was higher? No.’ Mina, Moderate

Theme 2: Trying to be a good (woman) citizen

Women related their experiences of breast cancer risk assessment with their ability to contribute to improving women’s health by participating in BC-Predict. However, how they reported the ways in which they responded to their personal breast cancer risk information linked with the level of agency they felt about managing their own health. The responses were driven by values women perceive are placed on them by society, that good citizenship is about maximising health and avoiding illness-triggering behaviours. These influenced and underpinned whether their risk information was empowering or led women to place these societal value judgements on themselves and ultimately feel judged by others.

I’m terrible at this, it almost feels like I’m in a competition. And if I don’t get the best outcome, I feel I’ve done something wrong, or not quite good enough. Theresa, High

Firstly, regardless of risk category, the offer of risk assessment was often viewed as something that women should do, to both support the healthcare system and benefit women more widely. Even for those who had concerns about their own risk feedback, taking part in BC-Predict allowed them to feel that they positively contributed to society. Like many other women, Rachel (Average-risk) explained that she could see the value of risk assessment in having the potential to specifically detect breast cancer early, not necessarily for themselves but for future generations.

‘…I’m little bit of a hypochondriac sometimes and a bit of a bury things under the carpet and hope they never rear their heads or just go away if they do. But I thought, well, I’m here, so I may as well do it, it can’t do any harm and it can only hopefully progress treatment for diagnoses or any…whatever it might be, and can only really be for overall long-term benefit…’ Rachel, Average

Despite this predominant underlying altruistic motivation to participate in risk assessment, another aspect of taking part related to the belief that there is a responsibility placed on the individual to care for their own health. This rulebook of duties related to breast awareness and health behaviours. Due to this, many women described their personal BC-Predict feedback positively as it offered the opportunity to receive ‘information about how they could reduce their risk’ (Gemma, High) or maintain lower risk. Indeed, low and average-risk women generally viewed the letter detail listing what health behaviours could prevent their risk being higher as passing a test, confirmation that they are following these implicit rules and ‘doing something right’ (Deborah, Average). For some in this risk category, like Abigail (Average risk) below, this extended to sharing the view that every woman should have this opportunity regardless of how old they are, so they can also be dutiful about their health.

‘I think they should do this for all ages of women. But especially much younger women. Yes, because like I say 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

Conversely, some women who received a higher risk, perceived their risk as having been impossible to personally avoid. In these cases, women cited age, including having children over the age of thirty, as the main contributing non-modifiable risk factor listed in their feedback. Even when coupled with the detail that modifiable risk factors such as losing weight could reduce risk, for women who perceive their risk as something ‘I literally cannot do anything about’ (Norah, Moderate), they appeared to disregard this information. This was particularly apparent for those who felt unable to make any additional health-related behaviour changes or declined risk-reducing medication. Meanwhile, the same two women who sought support via a ‘two-way dialogue’ (Mary Moderate) with a HCP, were left wanting to personally reduce their risk but felt unable to realise this unsupported. Embedded throughout the data was a clear narrative that women want to do their best to manage their own health or be able to demonstrate that they are trying to do so. For some women, they received this help from the HCP interaction post-risk feedback. If women do not feel enabled to action this, it created a sense of lasting unease and reduces the acceptability of risk-stratified breast screening.

‘…I would have liked maybe some advice to make sure that the, you know, the steps I take, my lifestyle, that I am doing everything I can do, or to see whether there’s anything else I could do to keep, you know…to manage the risk as it is. I think that that’s all, just probably a little bit of peace of mind I suppose, that I’m doing the right thing.’ Margaret, Moderate

Feeling personally responsible for one’s breast cancer risk appeared to have a particularly strong impact for those who viewed themselves as women who have looked after themselves over the years. This led Lynne (Moderate-risk) to express some shame about receiving this result. When these ideals were coupled with a higher-risk category, the utility of knowing personal risk was questioned.

‘’Cause I thought, I am sure I’m doing everything right, I am a good little girl […] You know, has it achieved so much for me, not really. It put the wind up me and it has put the wind up me of something then I can’t control, to which I desperately tried all my life to live a healthy lifestyle.’ Lynne, Moderate.

Equally, how women assume HCPs outside the BC-Predict study are likely to respond to discussions about their risk feedback caused some to express feeling left to manage their risk alone. In Fran’s (Moderate-risk) case, she thought her primary care doctor would blame her for being at higher risk and was worried that they would be unsupportive and say ‘go away and lose some weight’ rather than prescribe the risk-reducing medication that she wants. The framing of the risk information based on modifiable risk factors and less emphasis in the risk feedback letter on other risk management options such as access to medication, was therefore acknowledged as potentially leading to disempowerment. This was emphasised by women who feel judged for having the risk they received because the message that they should have been looking after themselves is something they are told time and time again. Due to this, the message that health behaviours are protective, and specifically against breast cancer, was diluted.

‘The feedback was in, kind of, two bits. And things that were things that you could control, you could do something about looking forward and things that you couldn’t. So, I think kind of, one of them was the fact that I’d not had children till I was a bit older, and that was a risk factor. Now, I mean, knowing that risk factor, isn’t very much help to me really, ‘cause there’s nothing I can do about it. Whereas the risk factors I could do something about are the risk factors that whenever you have any health intervention they say to you, you know, you should exercise regularly, drink less, lose some weight, you know, those things that they tell you all the time. […] And it does always seem to me that there’s an extent to which health service…blame’s too strong a word, but they try to shift responsibility onto you for health issues. Whereas I think the health service should be there to treat health issues, not to decide who’s to blame.’ Anita, Moderate

Regardless of the degree of control women felt they had about being able to impact the risk category they were in, many acknowledged that risk management via health behaviours is an enduring responsibility due to the constant societal norm that one should try to avoid illness. This was however sometimes viewed as difficult to sustain within the context of a busy life. Delia (Low risk) discussed experiencing ongoing negative events that prevent opportunities to practice health behaviours since receiving a low-risk result with feelings of guilt. This led her to assume that if she were to have her risk re-reassessed, it would no longer be low risk, emphasising how women interpret their own health-related behaviours as contributing to future risk.

‘If I were to do that questionnaire today, being honest about everything, it’d be a different story. A number of things have happened that have altered the way I’ve…yeah, my sleep pattern’s terrible at the minute, I’m not exercising, I’m eating rubbish, to be honest, and my alcohol intake has increased. I suspect if I was to do that today, it would come back worse…my prediction would not be quite as good.’ Delia, Low

In addition to health behaviours related to diet and physical activity, women discussed attending future mammograms, including more frequent screening if higher risk. Even though low and average-risk women viewed themselves as passing this societal “optimise your health” test, attending future mammograms was considered as ‘a responsible thing to do’ (Evelyn, Low) to maintain this health optimisation.

‘I don’t believe I need to change anything or I can impact anything to…you can’t remove all risk, if you’re low risk and don’t believe there’s anything you can do to improve that risk, make it less, I don’t think…that’s how I understood the feedback, that there’s nothing I personally can do to mitigate my risk category. So, the only thing I can do is ensure that I go to the screenings that I’m invited to.’ Liz, Low

This view was echoed by women in the moderate and high-risk groups. However, several of these women highlighted that they had previously received information indicating they were at higher risk of breast cancer prior to BC-Predict. They also reported they had accessed additional mammograms to manage their risk but current guidelines impose age restrictions meaning they were no longer offered this support and moved into the 3-yearly national programme. Should such women remain at higher risk, they may be left feeling unable to be dutiful about their health given that BC-Predict was offered as part of routine screening. For example, Suzanne (Moderate-risk) is less able to exert health agency within the constraints of NHS care pathways for women at higher risk which does not allow her to access more frequent mammograms at her age. Yet, this was previously reassuring rather than having to feel solely responsible for managing her breast cancer risk. BC-Predict provides women the opportunity to have their breast cancer risk assessed but equally, the current system is not yet adapted to allow women fully feel in control of their risk.

So I presume that three yearly is perfectly safe, and yeah, I would prefer yearly just because I’m so used to having it yearly. Suzanne, Moderate

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