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European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

ABSTRACT: BACKGROUND:Increased knowledge of breast cancer risk factors has meant that we are currently exploring risk-based screening, i.e. determining screening strategies based on women's varying levels of risk. This also enables risk management through primary prevention strategies, e.g. a lifestyle programme or risk-reducing medication. However, future implementation of risk-based screening and prevention will warrant significant changes in current practice and policy. The present study explores women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention to optimise acceptability and uptake. METHODS:A total of 143 women eligible for breast cancer screening in the Netherlands, the United Kingdom, and Sweden participated in focus group discussions. The focus group discussions were transcribed verbatim and the qualitative data was analysed using thematic analysis. RESULTS:Women from all three countries generally agreed on the overall proceedings, e.g. a risk assessment after which the risk estimate is communicated via letter (for below average and average risk) or consultation (for moderate and high risk). However, discrepancies in information needs, preferred risk communication format and risk counselling professional were identified between countries. Additionally, a need to educate healthcare professionals on all aspects of the risk-based screening and prevention programme was established. CONCLUSION:Women's insights identified the need for country-specific standardised protocols regarding the assessment and communication of risk, and the provision of heterogeneous screening and prevention recommendations, monitoring the principle of solidarity in healthcare policy.

SUBMITTER: Rainey L

PROVIDER: S-EPMC7092605 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

Rainey Linda L van der Waal Daniëlle D Jervaeus Anna A Donnelly Louise S LS Evans D Gareth DG Hammarström Mattias M Hall Per P Wengström Yvonne Y Broeders Mireille J M MJM

BMC cancer 20200324 1

<h4>Background</h4>Increased knowledge of breast cancer risk factors has meant that we are currently exploring risk-based screening, i.e. determining screening strategies based on women's varying levels of risk. This also enables risk management through primary prevention strategies, e.g. a lifestyle programme or risk-reducing medication. However, future implementation of risk-based screening and prevention will warrant significant changes in current practice and policy. The present study explor ...[more]

PMID: 32209062

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Project description:BackgroundIn Aotearoa New Zealand, Pasifika women have a higher rate of cervical cancer incidence and mortality than European/Other women and a lower screening rate. Despite actions to reduce the barriers, there has been little change in screening coverage for Pasifika women since 2007. Novel strategies are therefore required. Persistent cervical infection with oncogenic human papillomavirus (HPV) causes virtually all cervical cancers and HPV testing will be implemented in Aotearoa in 2023, with women being able to choose to self-test. We undertook a qualitative focus group (FG) study with Pasifika women to explore their perspectives on the barriers to, and facilitators of, HPV self-testing and how best to implement this in Aotearoa.MethodsA trained female Pasifika Research Assistant facilitated participant recruitment and the FGs. Eligible participants self-identified as Pasifika, were aged 30-69 years, in the Wellington area, who had never been screened or who were overdue (≥5 years) for cervical-cancer screening. Recruitment was predominantly through Pasifika key-informant networks and in collaboration with Pasifika primary care providers. Participants were offered face-to-face FGs but, due to occasional Covid-19 restrictions and personal preferences, FGs via Zoom were also used. The FGs were audio-recorded and transcribed verbatim. The FG transcripts were thematically analysed.FindingsSeven FGs were conducted with 24 participants. We identified five main themes around barriers and potential facilitators of HPV self-testing in Pasifika women: 1) perceptions and knowledge of cervical-cancer screening; 2) challenges to engaging in organised cervical screening; 3) perceptions of self-testing for HPV and challenges women face when deciding to self-test; 4) enthusiasm for an HPV self-test; and 5) information and communication. Knowledge about cervical cancer and screening varied considerably among participants, with some never having heard about cervical-cancer screening. The main challenges that were raised were personal privacy and confidentiality and time management. There was consensus around the need for adequate, consistent, and accurate accessible information to boost the confidence of women undertaking self-testing. In general, the participants were eager for self-testing to be made available soon. This was accompanied by the need for the promotion and implementation of self-testing to include a collective/community approach consistent with Pasifika worldviews.InterpretationAlthough participants were enthusiastic about HPV self-testing, multi-level and interacting barriers exist to participation by Pasifika women in HPV self-testing. Implementation of self-testing in Aotearoa New Zealand should be accompanied by clear information about the entire process, using culturally appropriate tailored educational campaigns in different Pasifika languages.FundingThe study was supported by the Collaboration for Cancer Research Aotearoa New Zealand (CCR).

Project description:BackgroundWomen attending mammography screening units (msus) and well women's clinics (wwcs) represent a motivated cohort likely to engage in interventions aimed at primary breast cancer (bca) prevention.MethodsWe used a feasibility questionnaire distributed to women (40-49 or 50-74 years of age) attending msus and wwcs in Halifax, Nova Scotia, to examine■ women's views about bca primary prevention and sources of health care information,■ prevalence of lifestyle-related bca risk factors, and■ predictors of prior mammography encounters within provincial screening guidelines.Variables examined included personal profiling, comorbidities, prior mammography uptake, lifestyle behaviours, socioeconomic status, health information sources, and willingness to discuss or implement lifestyle modifications, or endocrine therapy, or both. A logistic regression analysis examined associations with prior mammography encounters.ResultsOf the 244 responses obtained during 1.5 months from women aged 40-49 years (n = 75) and 50-74 years (n = 169), 56% and 75% respectively sought or would prefer to receive health information from within, as opposed to outside, health care. Lifestyle-related bca risk factors were prevalent, and most women were willing to discuss or implement lifestyle modifications (93%) or endocrine therapy (67%). Of the two age groups, 49% and 93% respectively had previously undergone mammography within guidelines. Increasing age and marital status (single, separated, or divorced vs. married or partnered) were independent predictors of prior mammography encounters within guidelines for women 40-49 years of age; no independent predictors were observed in the older age group.ConclusionsWomen attending msus and wwcs seem to largely adhere to mammography guidelines and appear motivated to engage in bca primary prevention strategies, including lifestyle modifications and endocrine therapy. Women's views as observed in this study provide a rationale for the potential incorporation of bca risk assessment within the "mammogram point of care" to engage motivated women in bca primary prevention strategies.

Project description:BackgroundThe Predicting Risk of Cancer at Screening (PROCAS) study provided women who were eligible for breast cancer screening in Greater Manchester (United Kingdom) with their 10-year risk of breast cancer, i.e., low (≤1.5%), average (1.5-4.99%), moderate (5.-7.99%) or high (≥8%). The aim of this study is to explore which factors were associated with women's uptake of screening and prevention recommendations. Additionally, we evaluated women's organisational preferences regarding tailored screening.MethodsA total of 325 women with a self-reported low (n = 60), average (n = 125), moderate (n = 80), or high (n = 60) risk completed a two-part web-based survey. The first part contained questions about personal characteristics. For the second part women were asked about uptake of early detection and preventive behaviours after breast cancer risk communication. Additional questions were posed to explore preferences regarding the organisation of risk-stratified screening and prevention. We performed exploratory univariable and multivariable regression analyses to assess which factors were associated with uptake of primary and secondary breast cancer preventive behaviours, stratified by breast cancer risk. Organisational preferences are presented using descriptive statistics.ResultsSelf-reported breast cancer risk predicted uptake of (a) supplemental screening and breast self-examination, (b) risk-reducing medication and (c) preventive lifestyle behaviours. Further predictors were (a) having a first degree relative with breast cancer, (b) higher age, and (c) higher body mass index (BMI). Women's organisational preferences for tailored screening emphasised a desire for more intensive screening for women at increased risk by further shortening the screening interval and moving the starting age forward.ConclusionsBreast cancer risk communication predicts the uptake of key tailored primary and secondary preventive behaviours. Effective communication of breast cancer risk information is essential to optimise the population-wide impact of tailored screening.

Project description:ObjectiveTo elicit women's responses to information about the nature and extent of overdiagnosis in mammography screening (detecting disease that would not present clinically during the woman's lifetime) and explore how awareness of overdiagnosis might influence attitudes and intentions about screening.DesignQualitative study using focus groups that included a presentation explaining overdiagnosis, incorporating different published estimates of its rate (1-10%, 30%, 50%) and information on the mortality benefit of screening, with guided group discussionsSettingSydney, AustraliaParticipantsFifty women aged 40-79 years with no personal history of breast cancer and with varying levels of education and participation in screening.ResultsPrior awareness of breast cancer overdiagnosis was minimal. Women generally reacted with surprise, but most came to understand the issue. Responses to overdiagnosis and the different estimates of its magnitude were diverse. The highest estimate (50%) made some women perceive a need for more careful personal decision making about screening. In contrast, the lower and intermediate estimates (1-10% and 30%) had limited impact on attitudes and intentions, with many women remaining committed to screening. For some women, the information raised concerns, not about whether to screen but whether to treat a screen detected cancer or consider alternative approaches (such as watchful waiting). Information preferences varied: many women considered it important to take overdiagnosis into account and make informed choices about whether to have screening, but many wanted to be encouraged to be screened.ConclusionsWomen from a range of socioeconomic backgrounds could comprehend the issue of overdiagnosis in mammography screening, and they generally valued information about it. Effects on screening intentions may depend heavily on the rate of overdiagnosis. Overdiagnosis will be new and counterintuitive for many people and may influence screening and treatment decisions in unintended ways, underscoring the need for careful communication.

Project description:As breast screening services move towards use of healthcare AI (HCAI) for screen reading, research on public views of HCAI can inform more person-centered implementation. We synthesise reviews of public views of HCAI in general, and review primary studies of women's views of AI in breast screening. People generally appear open to HCAI and its potential benefits, despite a wide range of concerns; similarly, women are open towards AI in breast screening because of the potential benefits, but are concerned about a wide range of risks. Women want radiologists to remain central; oversight, evaluation and performance, care, equity and bias, transparency, and accountability are key issues; women may be less tolerant of AI error than of human error. Using our recent Australian primary study, we illustrate both the value of informing participants before collecting data, and women's views. The 40 screening-age women in this study stipulated four main conditions on breast screening AI implementation: 1) maintaining human control; 2) strong evidence of performance; 3) supporting familiarisation with AI; and 4) providing adequate reasons for introducing AI. Three solutions were offered to support familiarisation: transparency and information; slow and staged implementation; and allowing women to opt-out of AI reading. We provide recommendations to guide both implementation of AI in healthcare and research on public views of HCAI. Breast screening services should be transparent about AI use and share information about breast screening AI with women. Implementation should be slow and staged, providing opt-out options if possible. Screening services should demonstrate strong governance to maintain clinician control, demonstrate excellent AI system performance, assure data protection and bias mitigation, and give good reasons to justify implementation. When these measures are put in place, women are more likely to see HCAI use in breast screening as legitimate and acceptable.

Project description:BACKGROUND:Breast cancer patients' misunderstanding of their systemic cancer recurrence risk has consequences on decision-making and quality of life. Little is known about how women derive their risk estimates. METHODS:Using Los Angeles and Georgia's SEER registries (2014-2015), a random sample of early-stage breast cancer patients was sent surveys about 2 to 3 months after surgery ( N = 3930; RR, 68%). We conducted an inductive thematic analysis of open-ended responses about why women chose their risk estimates in a uniquely large sub-sample ( N = 1,754). Clinician estimates of systemic recurrence risk were provided for patient sub-groups with DCIS and with low-, intermediate-, and high-risk invasive disease. Women's perceived risk of systemic recurrence (0% to 100%) was categorized as overestimation, reasonably accurate estimation, or underestimation (0% for invasive disease) and was compared across identified factors and by clinical presentation. RESULTS:Women identified 9 main factors related to their clinical experience (e.g., diagnosis and testing; treatment) and non-clinical beliefs (e.g., uncertainty; spirituality). Women who mentioned at least one clinical experience factor were significantly less likely to overestimate their risk (12% v. 43%, P < 0.001). Most women who were influenced by "communication with a clinician" had reasonably accurate recurrence estimates (68%). "Uncertainty" and "family and personal history" were associated with overestimation, particularly for women with DCIS (75%; 84%). "Spirituality, religion, and faith" was associated with an underestimation of risk (63% v. 20%, P < 0.001). LIMITATIONS:The quantification of our qualitative results is subject to any biases that may have occurred during the coding process despite rigorous methodology. CONCLUSIONS:Patient-clinician communication is important for breast cancer patients' understanding of their numeric risk of systemic recurrence. Clinician discussions about recurrence risk should address uncertainty and relevance of family and personal history.

Dataset Information

European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

Publications

European women's perceptions of the implementation and organisation of risk-based breast cancer screening and prevention: a qualitative study.

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