Consumer and clinician perspectives on personalising breast cancer prevention information

Keogh, LA; Steel, Emma; Weideman, Prue; Butow, Phyllis; Collins, Ian M.; Emery, J L; Mann, G Bruce; Bickerstaffe, Adrian; Trainer, AH; Hopper, L. D.; Phillips, KA

doi:10.1016/j.breast.2018.11.002

Cited by 25 publications

(26 citation statements)

References 28 publications

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“…This aligns with other research findings that suggest Australians are more comfortable seeking health-related genetic information from a health professional compared to a commercial company [37,38]. However, some participants expressed a lack of trust in GPs providing genomic risk information, as reported by others for personalised breast cancer prevention information [39].…”

Section: Discussionsupporting

confidence: 84%

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

et al. 2020

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Background: Genomic risk information, based on common genomic susceptibility variants associated with risk of complex diseases such as cancer, may be incorporated into personalised prevention and screening strategies. We aimed to engage with members of the public, who are important stakeholders in this process, to further inform program development and other implementation outcomes such as acceptability and appropriateness. Methods: Semi-structured interviews were undertaken with 30 participants (aged 24-69 years, 50% female) recruited from a pilot trial in which they received personalised genomic risk information for melanoma. We explored participants' views and attitudes towards offering general personal genomic risk information to the broader population. The data were analysed thematically. Results: Two overarching themes relevant to implementation considerations were identified. Firstly, participants' preferences for accepting an offer of genomic risk information were based on family history, disease incidence and the possibility of prevention. Secondly, participants felt that the processes for offering risk information should be based on individual preferences, triaged according to risk and be supported by a health professional trained in genomics. Conclusions: Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of implementation strategies for incorporating genomic risk information into routine clinical practice.

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Section: Discussionsupporting

confidence: 84%

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

et al. 2020

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“…This echoes previous research indicating that although risk-stratified breast screening was viewed positively by women who have not participated in breast cancer risk assessment, there was less enthusiasm for reduced screening if low-risk [ 18 , 20 ]. Previous research has shown American and Australian women have suspicions that breast screening programme changes are underpinned by money-saving efforts [ 31 , 32 ]. However, some considered less frequent screening altruistically where resources could be re-allocated to those in greater need, which may be based on the number of women who cited others affected by the disease.…”

Section: Discussionmentioning

confidence: 99%

Extending screening intervals for women at low risk of breast cancer: do they find it acceptable?

et al. 2021

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Background Trials of risk estimation in breast cancer screening programmes, in order to identify women at higher risk and offer extra screening/preventive measures, are ongoing. It may also be feasible to introduce less frequent screening for women at low-risk of breast cancer. This study aimed to establish views of women at low-risk of breast cancer regarding the acceptability of extending breast screening intervals for low-risk women beyond 3 y. Methods Semi-structured interviews were used to explore views of low-risk women, where “low-risk” was defined as less than 2% estimated 10-year risk of breast cancer aged > 46 years. Low-risk women were identified via the BC-Predict study, where following routine screening, women were given their 10-year risk of breast cancer by letter, along with additional information explaining breast cancer risk factors. To gain diversity of views, purposive sampling by ethnicity and socioeconomic background was used to recruit women. Data were analysed using thematic analysis. Results Twenty-three women participated in individual interviews. Three themes are reported: (1) A good opportunity to receive risk estimation, where women found it worthwhile to receive a low-risk result although some were surprised if expecting a higher risk result; (2) Multi-faceted acceptability of extended screening intervals, with reactions to less frequent screening dependent on whether women were confident in being low-risk status and current safety evidence, (3) Passive approval versus informed choice, highlighting that women found it difficult to consider choosing less frequent screening without professionals’ recommendations, as they generally viewed attending breast screening as positive. Conclusions Risk assessment and receiving a low-risk of breast cancer is acceptable although, further research is required with more diverse samples of women. Any recommendation of less frequent screening in this risk group should be evidence-based in order to be acceptable. Communication needs to be carefully developed, with a focus on ensuring informed choice, prior to trialling any extended screening recommendations in future studies.

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“…By contrast, a number of concerns exist among professionals working in this area, not least regarding costs and the available evidence base 38 . Similarly, major reservations surrounding the appropriateness of reducing the frequency of screening for women deemed to be at low risk have been expressed by health-care professionals, policymakers and women themselves 194 . A few high-quality ongoing studies 36,37 are examining these issues empirically, rather than discussing the issues as hypothetical possibilities 195 .…”

Section: Acceptabilitymentioning

confidence: 99%

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

et al. 2020

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The European Collaborative on Personalized Early Detection and Prevention of Breast Cancer (ENVISION) brings together several international research consortia working on different aspects of the personalized early detection and prevention of breast cancer. In a consensus conference held in 2019, the members of this network identified research areas requiring development to enable evidence-based personalized interventions that might improve the benefits and reduce the harms of existing breast cancer screening and prevention programmes. The priority areas identified were: 1) breast cancer subtype-specific risk assessment tools applicable to women of all ancestries; 2) intermediate surrogate markers of response to preventive measures; 3) novel non-surgical preventive measures to reduce the incidence of breast cancer of poor prognosis; and 4) hybrid effectiveness–implementation research combined with modelling studies to evaluate the long-term population outcomes of risk-based early detection strategies. The implementation of such programmes would require health-care systems to be open to learning and adapting, the engagement of a diverse range of stakeholders and tailoring to societal norms and values, while also addressing the ethical and legal issues. In this Consensus Statement, we discuss the current state of breast cancer risk prediction, risk-stratified prevention and early detection strategies, and their implementation. Throughout, we highlight priorities for advancing each of these areas.

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Consumer and clinician perspectives on personalising breast cancer prevention information

Cited by 25 publications

References 28 publications

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

Implementation considerations for offering personal genomic risk information to the public: a qualitative study

Extending screening intervals for women at low risk of breast cancer: do they find it acceptable?

Personalized early detection and prevention of breast cancer: ENVISION consensus statement

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