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      Reflections from Women with an Interval Breast Cancer Diagnosis: A Qualitative Analysis of Open Disclosure in the BreastScreen Western Australia Program

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          Abstract

          Background:

          ‘Interval breast cancer’ describes a malignancy that is diagnosed after a negative screening mammogram. Open disclosure is a process of addressing a negative health outcome that includes an apology and an opportunity for the client to discuss concerns. BreastScreen Western Australia has implemented a policy of open disclosure. The purpose of this study was to gain an understanding of clients’ experience with interval cancer and their attitude towards the screening programme by conducting a thematic analysis of written responses from women participating in the open disclosure process.

          Methods:

          Women experiencing an interval cancer diagnosis between 2011 and 2020 were sent a questionnaire by mail. It included two broad questions with free-text responses. A qualitative analysis of the responses was conducted using an inductive approach. Responses were de-identified and data were thematically analysed and presented using verbatim quotations.

          Results:

          Five themes emerged in response to “what could we have done better?”: ‘nothing,’ ‘broaden scope,’ ‘service delivery,’ ‘breast density education’ and ‘more education’ generally. Six themes emerged in response to “what did we do well?”: ‘staffing,’ ‘overall satisfaction,’ ‘reminders,’ ‘follow-up after interval cancer,’ ‘efficiency’ and ‘information and education provision.’ An additional theme of ‘storytelling’ emerged from both questions: an opportunity for the woman to share her experience of cancer.

          Conclusion:

          Most women expressed positive attitudes towards the service and appreciated giving feedback in the open disclosure process. Several themes supporting the role of BreastScreen in education were identified, including providing information about breast density, breast health, and limitations of screening.

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          Most cited references20

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          Screening for Breast Cancer: U.S. Preventive Services Task Force Recommendation Statement.

          Update of the 2009 U.S. Preventive Services Task Force (USPSTF) recommendation on screening for breast cancer.
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            Breast density and parenchymal patterns as markers of breast cancer risk: a meta-analysis.

            Mammographic features are associated with breast cancer risk, but estimates of the strength of the association vary markedly between studies, and it is uncertain whether the association is modified by other risk factors. We conducted a systematic review and meta-analysis of publications on mammographic patterns in relation to breast cancer risk. Random effects models were used to combine study-specific relative risks. Aggregate data for > 14,000 cases and 226,000 noncases from 42 studies were included. Associations were consistent in studies conducted in the general population but were highly heterogeneous in symptomatic populations. They were much stronger for percentage density than for Wolfe grade or Breast Imaging Reporting and Data System classification and were 20% to 30% stronger in studies of incident than of prevalent cancer. No differences were observed by age/menopausal status at mammography or by ethnicity. For percentage density measured using prediagnostic mammograms, combined relative risks of incident breast cancer in the general population were 1.79 (95% confidence interval, 1.48-2.16), 2.11 (1.70-2.63), 2.92 (2.49-3.42), and 4.64 (3.64-5.91) for categories 5% to 24%, 25% to 49%, 50% to 74%, and > or = 75% relative to < 5%. This association remained strong after excluding cancers diagnosed in the first-year postmammography. This review explains some of the heterogeneity in associations of breast density with breast cancer risk and shows that, in well-conducted studies, this is one of the strongest risk factors for breast cancer. It also refutes the suggestion that the association is an artifact of masking bias or that it is only present in a restricted age range.
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              Combined screening with ultrasound and mammography vs mammography alone in women at elevated risk of breast cancer.

              Screening ultrasound may depict small, node-negative breast cancers not seen on mammography. To compare the diagnostic yield, defined as the proportion of women with positive screen test results and positive reference standard, and performance of screening with ultrasound plus mammography vs mammography alone in women at elevated risk of breast cancer. From April 2004 to February 2006, 2809 women, with at least heterogeneously dense breast tissue in at least 1 quadrant, were recruited from 21 sites to undergo mammographic and physician-performed ultrasonographic examinations in randomized order by a radiologist masked to the other examination results. Reference standard was defined as a combination of pathology and 12-month follow-up and was available for 2637 (96.8%) of the 2725 eligible participants. Diagnostic yield, sensitivity, specificity, and diagnostic accuracy (assessed by the area under the receiver operating characteristic curve) of combined mammography plus ultrasound vs mammography alone and the positive predictive value of biopsy recommendations for mammography plus ultrasound vs mammography alone. Forty participants (41 breasts) were diagnosed with cancer: 8 suspicious on both ultrasound and mammography, 12 on ultrasound alone, 12 on mammography alone, and 8 participants (9 breasts) on neither. The diagnostic yield for mammography was 7.6 per 1000 women screened (20 of 2637) and increased to 11.8 per 1000 (31 of 2637) for combined mammography plus ultrasound; the supplemental yield was 4.2 per 1000 women screened (95% confidence interval [CI], 1.1-7.2 per 1000; P = .003 that supplemental yield is 0). The diagnostic accuracy for mammography was 0.78 (95% CI, 0.67-0.87) and increased to 0.91 (95% CI, 0.84-0.96) for mammography plus ultrasound (P = .003 that difference is 0). Of 12 supplemental cancers detected by ultrasound alone, 11 (92%) were invasive with a median size of 10 mm (range, 5-40 mm; mean [SE], 12.6 [3.0] mm) and 8 of the 9 lesions (89%) reported had negative nodes. The positive predictive value of biopsy recommendation after full diagnostic workup was 19 of 84 for mammography (22.6%; 95% CI, 14.2%-33%), 21 of 235 for ultrasound (8.9%, 95% CI, 5.6%-13.3%), and 31 of 276 for combined mammography plus ultrasound (11.2%; 95% CI. 7.8%-15.6%). Adding a single screening ultrasound to mammography will yield an additional 1.1 to 7.2 cancers per 1000 high-risk women, but it will also substantially increase the number of false positives. clinicaltrials.gov Identifier: NCT00072501.
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                Author and article information

                Journal
                Asian Pac J Cancer Prev
                Asian Pac J Cancer Prev
                APJCP
                Asian Pacific Journal of Cancer Prevention : APJCP
                West Asia Organization for Cancer Prevention (Iran )
                1513-7368
                2476-762X
                2023
                : 24
                : 2
                : 633-639
                Affiliations
                [1 ] National School of Medicine, The University of Notre Dame Australia, Sydney, NSW, Australia.
                [2 ] Breast Screen Western Australia, Women and Newborn Health Service, Perth, WA, Australia.
                [3 ] Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, NSW and The Daffodil Centre, the University of Sydney, a joint venture with Cancer Council NSW, Australia.
                [4 ] School of Medicine, University of Western Australia, Perth, Western, Australia.
                Author notes
                [* ]For Correspondence: meagan.brennan@nd.edu.au
                Article
                10.31557/APJCP.2023.24.2.633
                10162615
                36853314
                158a7347-b3cb-4c44-835f-2cddbcb0853d

                This work is licensed under a Creative Commons Attribution-Non Commercial 4.0 International License. https://creativecommons.org/licenses/by-nc/4.0/

                History
                : 24 September 2022
                : 17 February 2023
                Categories
                Research Article

                breast neoplasms,disclosure,mammography,mass screening
                breast neoplasms, disclosure, mammography, mass screening

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