Dataset Information

Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study.

ABSTRACT: To explore the influence of overdiagnosis information on women's decisions about mammography.A qualitative focus group study with purposive sampling and thematic analysis, in which overdiagnosis information was presented.Community and university settings in London.40 women within the breast screening age range (50-71 years) including attenders and non-attenders were recruited using a recruitment agency as well as convenience sampling methods.Women expressed surprise at the possible extent of overdiagnosis and recognised the information as important, although many struggled to interpret the numerical data. Overdiagnosis was viewed as less-personally relevant than the possibility of 'under diagnosis' (false negatives), and often considered to be an issue for follow-up care decisions rather than screening participation. Women also expressed concern that information on overdiagnosis could deter others from attending screening, although they rarely saw it as a deterrent. After discussing overdiagnosis, few women felt that they would make different decisions about breast screening in the future.Women regard it as important to be informed about overdiagnosis to get a complete picture of the risks and benefits of mammography, but the results of this study indicate that understanding overdiagnosis may not always influence women's attitudes towards participation in breast screening. The results also highlight the challenge of communicating the individual significance of information derived from population-level modelling.

SUBMITTER: Waller J

PROVIDER: S-EPMC3641428 | biostudies-other | 2013

REPOSITORIES: biostudies-other

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Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study.

Waller Jo J Douglas Elaine E Whitaker Katriina L KL Wardle Jane J

BMJ open 20130422 4

<h4>Objectives</h4>To explore the influence of overdiagnosis information on women's decisions about mammography.<h4>Design</h4>A qualitative focus group study with purposive sampling and thematic analysis, in which overdiagnosis information was presented.<h4>Setting</h4>Community and university settings in London.<h4>Participants</h4>40 women within the breast screening age range (50-71 years) including attenders and non-attenders were recruited using a recruitment agency as well as convenience ...[more]

PMID: 23610383

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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:ObjectiveTo investigate conceptual knowledge about mammographic screening among Norwegian women.DesignWe administered a cross-sectional, web-based survey. We used multiple-choice questions and a grading rubric published by a research group from Australia.SettingOur Norwegian-language survey was open from April to June 2020 and targeted women aged 45-74 years.Participants2033 women completed our questionnaire. We excluded 13 women outside the target age range and 128 women with incomplete data. Responses from 1892 women were included in the final study sample.Primary and secondary outcome measuresThe questionnaire focused on women's knowledge about the breast cancer mortality reduction, false positive results and overdiagnosis associated with mammographic screening. The primary outcome was the mean number of marks assigned in each of the three themes and overall. There were three potential marks for questions about breast cancer mortality, one for false positives and six for overdiagnosis.ResultsMost women (91.7%) correctly reported that screened women are less likely to die of breast cancer than non-screened women. 39.7% of women reported having heard of a 'false positive screening result' and 86.2% identified the term's definition; 51.3% of women had heard of 'overdiagnosis' and 14.8% identified the term's definition. The mean score was 2.59 of 3 for questions about breast cancer mortality benefit and 0.93 of 1 for the question about false positive screening results. It was 2.23 of 6 for questions about overdiagnosis.ConclusionsMost participants correctly answered questions about the breast cancer mortality benefit and false positive results associated with screening. The proportion of correct responses to questions about overdiagnosis was modest, indicating that conceptual knowledge about overdiagnosis was lower. Qualitative studies that can obtain in-depth information about women's understanding of overdiagnosis may help improve Norwegian-language information about this challenging topic.

Project description:BackgroundUntil 2019, the English schools-based human papillomavirus (HPV) vaccination programme was offered to young women (but not young men) aged 12 to 13 years to reduce HPV-related morbidity and mortality. The aim of this study is to explore the extent to which young women were able to exercise autonomy within the HPV vaccination programme. We consider the perspectives of young women, parents and professionals and how this was influenced by the content and form of information provided.MethodsRecruitment was facilitated through a healthcare organisation, schools and community organisations in a local authority in the south-west of England. Researcher observations of HPV vaccination sessions were carried out in three schools. Semi-structured interviews took place with 53 participants (young women, parents of adolescent children, school staff and immunisation nurses) during the 2017/18 and 2018/19 programme years. Interviews were recorded digitally and transcribed verbatim. Thematic analysis was undertaken, assisted by NVivo software.ResultsYoung women's active participation and independence within the HPV vaccination programme was constrained by the setting of vaccination and the primacy of parental consent procedures. The authoritarian school structure influenced the degree to which young women were able to actively participate in decisions about the HPV vaccination programme. Young women exercised some power, either to avoid or receive the vaccine, by intercepting parental consent forms and procedures. Reliance on leaflets to communicate information led to unmet information needs for young women and their families. Communication may be improved by healthcare professional advocacy, accessible formats of information, and delivery of educational sessions.ConclusionsStrategies to improve communication about the HPV vaccine may increase young people's autonomy in consent procedures, clarify young people's rights and responsibilities in relation to their health care services, and result in higher uptake of the HPV vaccination programme.Trial registrationISRCTN 49086105 ; Date of registration: 12 January 2018; Prospectively registered.

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:BackgroundMammography screening can lead to overdiagnosis-that is, screen-detected breast cancer that would not have caused symptoms or signs in the remaining lifetime. There is no consensus about the frequency of breast cancer overdiagnosis.ObjectiveTo estimate the rate of breast cancer overdiagnosis in contemporary mammography practice accounting for the detection of nonprogressive cancer.DesignBayesian inference of the natural history of breast cancer using individual screening and diagnosis records, allowing for nonprogressive preclinical cancer. Combination of fitted natural history model with life-table data to predict the rate of overdiagnosis among screen-detected cancer under biennial screening.SettingBreast Cancer Surveillance Consortium (BCSC) facilities.ParticipantsWomen aged 50 to 74 years at first mammography screen between 2000 and 2018.MeasurementsScreening mammograms and screen-detected or interval breast cancer.ResultsThe cohort included 35 986 women, 82 677 mammograms, and 718 breast cancer diagnoses. Among all preclinical cancer cases, 4.5% (95% uncertainty interval [UI], 0.1% to 14.8%) were estimated to be nonprogressive. In a program of biennial screening from age 50 to 74 years, 15.4% (UI, 9.4% to 26.5%) of screen-detected cancer cases were estimated to be overdiagnosed, with 6.1% (UI, 0.2% to 20.1%) due to detecting indolent preclinical cancer and 9.3% (UI, 5.5% to 13.5%) due to detecting progressive preclinical cancer in women who would have died of an unrelated cause before clinical diagnosis.LimitationsExclusion of women with first mammography screen outside BCSC.ConclusionOn the basis of an authoritative U.S. population data set, the analysis projected that among biennially screened women aged 50 to 74 years, about 1 in 7 cases of screen-detected cancer is overdiagnosed. This information clarifies the risk for breast cancer overdiagnosis in contemporary screening practice and should facilitate shared and informed decision making about mammography screening.Primary funding sourceNational Cancer Institute.

Project description:BackgroundExcess weight and unhealthy behaviours (e.g. sedentariness, high alcohol) are common amongst women including those attending breast screening. These factors increase the risk of breast cancer and other diseases. We tested the feasibility and acceptability of a weight loss/behaviour change programme framed to reduce breast cancer risk (breast cancer prevention programme, BCPP) compared to one framed to reduce risk of breast cancer, cardiovascular disease (CVD) and diabetes (T2D) (multiple disease prevention programme, MDPP).MethodsWomen aged 47-73 years with overweight or obesity (n = 1356) in the NHS Breast Screening Programme (NHSBSP) were randomised (1:2) to be invited to join a BCPP or a MDPP. The BCPP included personalised information on breast cancer risk and a web and phone weight loss/behaviour change intervention. The MDPP also included an NHS Health Check (lipids, blood pressure, HbA1c and personalised feedback for risk of CVD [QRISK2] and T2D [QDiabetes and HbA1c]). Primary outcomes were uptake and retention and other feasibility outcomes which include intervention fidelity and prevalence of high CVD and T2D risk. Secondary outcomes included change in weight.ResultsThe BCPP and MDPP had comparable rates of uptake: 45/508 (9%) vs. 81/848 (10%) and 12-month retention; 33/45 (73%) vs. 53/81 (65%). Both programmes had a high fidelity of delivery with receipt of mean (95% CI) 90 (88-98% of scheduled calls, 91 (86-95%) of scheduled e-mails and 89 (76-102) website entries per woman over the 12-month period. The MDPP identified 15% of women with a previously unknown 10-year CVD QRISK2 of ≥ 10% and 56% with 10-year Qdiabetes risk of ≥ 10%. Both groups experienced good comparable weight loss: BCPP 26/45 (58%) and MDPP 46/81 (57%) with greater than 5% weight loss at 12 months using baseline observation carried forward imputation.ConclusionsBoth programmes appeared feasible. The MDPP identified previously unknown CVD and T2D risk factors but does not appear to increase engagement with behaviour change beyond a standard BCPP amongst women attending breast screening. A future definitive effectiveness trial of BCPP is supported by acceptable uptake and retention, and good weight loss.Trial registrationISRCTN91372184 , registered 28 September 2014.

Dataset Information

Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study.

Publications

Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study.

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