UK Women’s Views of the Concepts of Personalised Breast Cancer Risk Assessment and Risk-Stratified Breast Screening: A Qualitative Interview Study

Abstract

Any introduction of risk-stratification within the NHS Breast Screening Programme needs to be considered acceptable by women. We conducted interviews to explore women’s attitudes to personalised risk assessment and risk-stratified breast screening. Twenty-five UK women were purposively sampled by screening experience and socioeconomic background. Interview transcripts were qualitatively analysed using Framework Analysis. Women expressed positive intentions for personal risk assessment and willingness to receive risk feedback to provide reassurance and certainty. Women responded to risk-stratified screening scenarios in three ways: ‘Overall acceptors’ considered both high- and low-risk options acceptable as a reasonable allocation of resources to clinical need, yet acceptability was subject to specified conditions including accuracy of risk estimates and availability of support throughout the screening pathway. Others who thought ‘more is better’ only supported high-risk scenarios where increased screening was proposed. ‘Screening sceptics’ found low-risk scenarios more aligned to their screening values than high-risk screening options. Consideration of screening recommendations for other risk groups had more influence on women’s responses than screening-related harms. These findings demonstrate high, but not universal, acceptability. Support and guidance, tailored to screening values and preferences, may be required by women at all levels of risk.

A community jury study exploring the public acceptability of using risk stratification to determine eligibility for cancer screening

“…Our participants' positive acceptance of risk stratification is consistent with findings from previous research in less informed participants that focused on specific cancer types 11–13,24,28–32 . The possibility for risk assessment to support behaviour change has also been made by members of the public previously 24 .…”

“…Such concerns around accepting reduced screening for those at low risk have been reported previously. 13 , 14 , 28 , 30 , 31 , 32 , 35 Coupled with findings that overdetection in population screening is acceptable to the public and that many are willing to undergo diagnostic testing regardless of cancer risk, 36 , 37 this reinforces the relatively low importance placed by the public on the potential harms of screening people at low risk. We were able to observe that among our participants this was a matter of fairness, with many initially seeking equality in screening (meaning the equal provision of and access to screening services, according to Sasieni's definition) before considering the implications and becoming more favourable to a more equitable risk‐stratified approach (attempting to equalize cancer outcomes).…”

“…Such concerns around accepting reduced screening for those at low risk have been reported previously. 13,14,28,[30][31][32]35 Coupled with findings that overdetection in population screening is acceptable to the public and that many are willing to undergo diagnostic testing regardless of cancer risk, 36,37 this reinforces the relatively low importance placed by the public on the potential harms of screening people at low risk.…”

“…Our participants' positive acceptance of risk stratification is consistent with findings from previous research in less informed participants that focused on specific cancer types. 11 , 12 , 13 , 24 , 28 , 29 , 30 , 31 , 32 The possibility for risk assessment to support behaviour change has also been made by members of the public previously. 24 Despite being presented with quantitative data on the potential benefits, the scale of the benefits did not appear to be important.…”

What are the views of three key stakeholder groups on extending the breast screening interval for low‐risk women? A secondary qualitative analysis

“…33 Furthermore, research has shown that women require prompting to consider screening harms in low-risk pathway scenarios, and so, addressing awareness and understanding of the harms is necessary for communicating low-risk pathways to women. 28 Despite heightened concerns from the professional stakeholders that women would not receive the change to low-risk pathways well, women in fact had concerns that were less severe than both the HCPs and NSFs. Women showed that with good communication from professional experts, most worries would be alleviated, and given it is a Government programme, they would be confident in what was advised.…”