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

Abstract

Background Risk-stratified screening is being considered for national breast screening programmes. It is unclear how women experience risk-stratified screening and receipt of breast cancer risk information in real time. This study aimed to explore the psychological impact of undergoing risk-stratified screening within England’s NHS Breast Screening Programme. Methods Individual telephone interviews were conducted with 40 women who participated in the BC-Predict study and received a letter indicating their estimated breast cancer risk as one of four risk categories: low (<2% 10-year risk), average (2–4.99%), above average (moderate; 5–7.99%) or high (≥8%). Audio-recorded interview transcriptions were analysed using reflexive thematic analysis. Results Two themes were produced: ‘From risk expectations to what’s my future health story?’ highlights that women overall valued the opportunity to receive risk estimates; however, when these were discordant with perceived risk, this causes temporary distress or rejection of the information. ‘Being a good (woman) citizen’ where women felt positive contributing to society but may feel judged if they then cannot exert agency over the management of their risk or access follow-up support Conclusions Risk-stratified breast screening was generally accepted without causing long-lasting distress; however, issues related to risk communication and access to care pathways need to be considered for implementation.

How do women experience a change in their clinically-derived breast cancer risk estimates: views from a UK Family History Risk and Prevention Clinic

“…It may also account for why those discharged felt apprehensive when faced with population screening, as relationships built at the FHRPC and comfort received would cease. This apprehension is also found in women offered risk estimation and strati cation in the general population, with those previously receiving annual screening questioning the safety of 3-yearly screening and feeling less in control of their risk [27].…”

Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach

“…Further research is also needed to investigate whether people with lower HL indeed benefit from the designed risk visualizations. Although recently more research has been conducted on informing women about their risk of breast cancer when participating in breast cancer screening [ 66 , 67 ], it is important that research is conducted on information materials when inviting women to participate in risk-based BC screening. For example, the information in the invitation for risk-based BC screening after classification in a specific risk category will need to contain more specific information about the exact harms and benefits associated with the relevant risk category than is the case in the results folder.…”

Risk-Stratified Breast Cancer Screening in Malaysia: Challenges and Opportunities

“…A risk-stratified approach aims to provide and enhance evidence-based and researchinformed decision-making that will personalise or tailor breast cancer screening decision pathways and increase patient benefits and reduce harm [26]. However, there is a risk of causing anxiety and worry to high-risk women, and, so, effective risk communication by well-trained professionals is crucial to minimize distress [27,28]. The Genetic Counselling Society Malaysia (GCSM) was initiated in 2019 [29] and, currently, genetic risk assessment and counselling services are provided in Kuala Lumpur Hospital, Penang Hospital, Universiti Sains Malaysia Hospital in Kubang Kerian, Canselor Tuanku Muhriz Hospital in Cheras and University Malaya Medical Centre, Kuala Lumpur [30].…”