Women's perceptions of personalized risk‐based breast cancer screening and prevention: An international focus group study

Abstract

Objective Increased knowledge of breast cancer risk factors enables a shift from one‐size‐fits‐all breast cancer screening to a risk‐based approach, tailoring screening policy to a woman's individual risk. New opportunities for prevention will arise. However, before this novel screening and prevention program is introduced, its acceptability from a woman's perspective needs to be explored. Methods Women eligible for breast cancer screening in the Netherlands, United Kingdom, and Sweden were invited to take part in focus groups. A total of 143 women participated. Data were transcribed verbatim and analyzed using thematic analysis. Results Analysis identified five themes across the three countries. The first theme “impact of knowledge” describes women's concern of not being able to unlearn their risk, perceiving it as either a motivator for change or a burden which may lead to stigma. The second theme “belief in science” explains women's need to trust the science behind the risk assessment and subsequent care pathways. Theme three “emotional impact” explores, eg, women's perceived anxiety and (false) reassurance, which may result from knowing their risk. Theme four “decision making” highlights cultural differences in shared versus individual decision making. Theme five “attitude to medication” explores the controversial topic of offering preventative medication for breast cancer risk reduction. Conclusions Acceptability of risk‐based screening and prevention is mixed. Women's perceptions are informed by a lack of knowledge, cultural norms, and common emotional concerns, which highlights the importance of tailored educational materials and risk counselling to aid either shared or individual informed decision making.

Dutch women’s intended participation in a risk-based breast cancer screening and prevention programme: a survey study identifying preferences, facilitators and barriers

“…We found that 10% of women were unsure about whether they would want to know their breast cancer risk. Our previous focus group study indicated several underlying factors affecting women's indecision, such as perceived emotional burden and lack of self-efficacy [8]. It additionally showed that women who were unsure about participation in the new risk-based screening programme tended to perceive a greater need for information [8].…”

“…A first qualitative exploration of the acceptability of risk-based breast cancer screening and prevention among a small group of women eligible for screening in the Netherlands, the United Kingdom, and Sweden confirmed the controversial nature of reduced screening intensity [8]. Women also expressed reluctance about participating in preventative practices to decrease their breast cancer risk.…”

“…Cross-sectional data were collected between June and October 2018 in the Netherlands using a web-based survey which was designed using qualitative focus group data [8]. Ethics approval was acquired from the regional ethics committee CMO Arnhem-Nijmegen (2015-1773).…”

“…Acceptability of risk-based screening was assessed using three proxy measures. These measures are based on results from a previous focus group study [8] which indicated that women who were accepting of risk-based screening and prevention showed (1) interest in knowing their breast cancer risk (yes vs. no or do not know), (2) had a low perceived need for supplemental mammography screening outside of the national screening programme (yes vs. no or do not know), and (3) a low perceived need for breast self-examination (yes vs. no or do not know). Acceptability of risk-based prevention was assessed using four proxy measures: willingness to change diet (yes vs. no or do not know), become more physically active (yes vs. no or do not know), limit alcohol intake (yes vs. no or do not know), and willingness to consider risk-reducing medication for the hypothetical moderate and high risk groups (yes vs. no or do not know).…”

“…Next, we performed exploratory univariable and multivariable regression analyses to assess associations between the determinants and the seven outcome measures which function as proxies for women's acceptability of risk-based screening and prevention. The selected associations that were explored were based on literature and our previous focus group study [8]. In the multivariable analyses, all associations were corrected for potential confounders.…”