Breast cancer incidence in pre-menopausal women is rising internationally, and younger cases are often more aggressive with poorer long-term survival compared with older women. In the UK, approximately 7% of breast cancers occur in women under 40, and many younger women diagnosed do not have a family history. Current NHS screening is targeted at ages 50–71, while younger women with a strong family history may be referred to family history and prevention clinics per NICE guidance. Given that established risk prediction models (for example Tyrer-Cuzick and BOADICEA) can combine family history, reproductive and hormonal factors, polygenic risk scores and behaviours to estimate individual risk, there is growing interest in offering personalised breast cancer risk assessment to women aged 30–49 to enable early screening or risk-reducing interventions. However, known inequalities in screening uptake raise concerns that such services might not reach under-served women without deliberate, inclusive design and community engagement.
This cross-sectional qualitative study used focus groups and one-to-one semi-structured interviews, conducted either in person or online. The research aimed specifically to engage women from communities and backgrounds known to experience barriers to breast screening and underrepresentation in previous research. The groups were identified through evidence and stakeholder consultation, and the project included Patient and Public Involvement and Engagement input prior to grant submission.
Women aged 30–49 without a history of breast cancer were recruited from six target groups: (1) South Asian (Muslim) women, (2) Black African and Black Caribbean women, (3) Roma women, (4) women living in low socio-economic neighbourhoods, (5) women with self-reported learning disabilities and/or autism, and (6) women with self-reported long-term anxiety and/or depression (defined as ≥1 year). In total, 52 women participated across 10 focus groups and one interview.
Data collection combined group discussion and one interview using semi-structured topic guides. Recordings and notes were analysed using a thematic framework approach to identify common and group-specific themes related to acceptability, perceived benefits, barriers, and preferences for delivery of a risk assessment service.
Across all groups, participants expressed enthusiasm for offering breast cancer risk assessment to younger women. Several consistent facilitators were identified:
Delivery by female healthcare staff was preferred to reduce discomfort and increase trust.
Local delivery of the service, for example in community settings, was seen as important to reduce logistical barriers and encourage attendance.
A straightforward, well-resourced process that minimised complexity and time burden would support engagement.
Clear assurances about data privacy and confidentiality were necessary to build trust in the service.
Community-based awareness activities and local events were supported as ways to promote risk assessment and increase knowledge about breast health.
These facilitators were viewed as ways to reduce shared barriers across diverse under-served populations and to make a proactive risk service more accessible.
Participants also described concerns that could limit uptake:
Emotional impact: many women worried about the psychological consequences of receiving high or moderate risk information. This highlighted the need for clear communication of results and tailored emotional or counselling support alongside risk feedback.
Cultural taboos and stigma: among ethnic minority women, breast cancer was often treated as a taboo subject, making open discussion and the sharing of family history more difficult. This could impede accurate risk estimation when family history is incomplete or withheld.
Practical obstacles: women from low socio-economic areas and those with disabilities or mental health conditions noted barriers including low health literacy, inaccessible invitation methods, competing life pressures, logistical challenges related to location, and difficulties accessing primary care. These factors mirror barriers previously reported for the NHS Breast Screening Programme.
Group-specific considerations: women with learning disabilities emphasised the need for accessible formats and invitation processes; women with long-term anxiety or depression described challenges navigating healthcare systems that may reduce screening participation.
The findings indicate that an inclusive risk assessment service for women aged 30–49 should be designed to address both common and unique barriers faced by under-served groups. Practical implications described by participants include:
Locally delivered clinics or outreach within communities to reduce travel and logistical burdens.
Female staff presence and culturally sensitive staffing to build trust and reduce cultural discomfort.
Simple, accessible invitation and information materials tailored for low health literacy and for people with learning disabilities or autism.
Explicit assurances and clear processes around data privacy to encourage participation.
Built-in psychosocial support and clear communication strategies for delivering risk results, with referral pathways for further counselling or risk management when needed.
Community engagement and awareness campaigns to normalise discussion about breast cancer and facilitate sharing of family history information where culturally appropriate.
These recommendations are intended to enhance uptake and reduce longstanding inequalities in early detection by making services responsive to the needs of marginalised women.
Participants from six under-served groups were broadly positive about offering breast cancer risk assessment to women aged 30–49, but emphasised that acceptability depends on culturally sensitive, streamlined delivery supported by local outreach, female staff, accessible communications, and privacy safeguards. Emotional impacts of risk information require proactive, tailored support. The study highlights overlapping and distinct barriers across groups and concludes that addressing these through community-based awareness and inclusive service design is necessary to reduce inequalities in early breast cancer detection. Details about specific implementation pilots or effectiveness outcomes were not reported in this qualitative engagement study.