The impact of delayed diagnosis and treatment due to COVID-19 on Australian thyroid cancer patients: a qualitative interview study.

OBJECTIVES: The study aims to investigate the perceptions of patients with thyroid cancer on the potential impact of diagnosis and treatment delays during the COVID-19 pandemic. DESIGN: This study involved qualitative semi-structured telephone interviews. The interviews were transcribed verbatim, analysed using the thematic framework analysis method and reported using the Consolidated Criteria for Reporting Qualitative Research. SETTING: Participants in the study were treated and/or managed at hospital sites across New South Wales and Victoria, Australia. PARTICIPANTS: 17 patients with thyroid cancer were interviewed and included in the analysis (14 females and 3 males). RESULTS: The delays experienced by patients ranged from <3 months to >12 months. The patients reported about delays to diagnostic tests, delays to surgery and radioactive iodine treatment, perceived disease progression and, for some, the financial burden of choosing to go through private treatment to minimise the delay. Most patients also reported not wanting to experience delays any longer than they did, due to unease and anxiety. CONCLUSIONS: This study highlights an increased psychological burden in patients with thyroid cancer who experienced delayed diagnosis and/or treatment during COVID-19. The impacts experienced by patients during this time may be similar in the case of other unexpected delays and highlight the need for regular clinical review during delays to diagnosis or treatment.

Effectiveness of hybrid digital breast tomosynthesis/digital mammography compared to digital mammography in women presenting for routine screening at Maroondah BreastScreen: Study protocol for a co-designed, non-randomised prospective trial.

BACKGROUND: Digital breast tomosynthesis (DBT) for breast cancer screening has been shown in international trials to increase cancer detection compared with mammography; however, results have varied across screening settings, and currently there is limited and conflicting evidence on interval cancer rates (a surrogate for screening effectiveness). Australian pilot data also indicated substantially longer screen-reading time for DBT posing a barrier for adoption. There is a critical need for evidence on DBT to inform its role in Australia, including evaluation of potentially more feasible models of implementation, and quantification of screening outcomes by breast density which has global relevance. METHODS: This study is a prospective trial embedded in population-based Australian screening services (Maroondah BreastScreen, Eastern Health, Victoria) comparing hybrid screening comprising DBT (mediolateral oblique view) and digital mammography (cranio-caudal view) with standard mammography screening in a concurrent group attending another screening site. All eligible women aged ≥40 years attending the Maroondah service for routine screening will be enrolled (unless they do not provide verbal consent and opt-out of hybrid screening; are unable to provide consent; or where a 'pushback' image on hybrid DBT cannot be obtained). Each arm will enrol 20,000 women. The primary outcomes are cancer detection rate (per 1000 screens) and recall rate (percentage). Secondary outcomes include 'opt-out' rate; cohort characteristics; cancer characteristics; assessment outcomes; screen-reading time; and interval cancer rate at 24-month follow-up. Automated volumetric breast density will be measured to allow stratification of outcomes by mammographic density. Stratification by age and screening round will also be undertaken. An interim analysis will be undertaken after the first 5000 screens in the intervention group. DISCUSSION: This is the first Australian prospective trial comparing hybrid DBT/mammography with standard mammography screening that is powered to show differences in cancer detection. Findings will inform future implementation of DBT in screening programs world-wide and provide evidence on whether DBT should be adopted in the broader BreastScreen program in Australia or in subgroups of screening participants. TRIAL REGISTRATION: The trial is registered with the Australian New Zealand Clinical Trials Registry (ANZCTR, ACTRN12623001144606, https://www.anzctr.org.au/). Registration will be updated to reflect trial progress and protocol amendments.

Lung cancer screening program factors that influence psychosocial outcomes: A systematic review.

OBJECTIVES: Lung cancer screening (LCS) programs are being designed and implemented globally. Early data suggests that the psychosocial impacts of LCS are influenced by program factors, but evidence synthesis is needed. This systematic review aimed to elucidate the impact of service-level factors on psychosocial outcomes to inform optimal LCS program design and future implementation. METHODS: Four databases were searched from inception to July 2023. Inclusion criteria were full-text articles published in English that reported an association between any program factors and psychosocial outcomes experienced during LCS. Study quality was appraised, and findings were synthesised narratively. RESULTS: Thirty-two articles were included; 29 studies were assessed at high or moderate risk of bias. Study designs were RCT (n = 3), pre-post (n = 6), cross-sectional (n = 12), mixed-methods (n = 1), and qualitative (n = 10) studies, and conducted primarily in the USA (n = 25). Findings suggested that targeted interventions can improve smoking-related or decisional psychosocial outcomes (e.g., smoking cessation interventions increase readiness/motivation to quit) but impacts of interventions on other psychological outcomes were varied. There was limited evidence reporting association between service delivery components and psychological outcomes, and results suggested moderation by individual aspects (e.g., expectation of results, baseline anxiety). Opportunities for discussion were key in reducing psychological harm. CONCLUSIONS: Certain program factors are reportedly associated with psychosocial impacts of LCS, but study heterogeneity and quality necessitate more real-world studies. Future work should examine (a) implementation of targeted interventions and high-value discussion during LCS, and (b) optimal methods and timing of risk and result communication, to improve psychosocial outcomes while reducing time burden for clinicians.

Understanding general practitioners' prescribing choices to patients with chronic low back pain: a discrete choice experiment.

BACKGROUND: Although NSAIDs are recommended as a first line analgesic treatment, opioids are very commonly prescribed to patients with low back pain (LBP) despite risks of harms. AIM: This study aimed to determine factors contributing to general practitioners' (GPs') prescribing choices to patients with chronic LBP in a primary care setting. METHOD: This discrete choice experiment (DCE) presented 210 GPs with hypothetical scenarios of a patient with chronic LBP. Participants chose their preferred treatment for each choice set, either the opioid, NSAID or neither. The scenarios varied by two patient attributes; non-specific LBP or LBP with referred leg pain (sciatica) and number of comorbidities. The three treatment attributes also varied, being: the type of opioid or NSAID, degree of pain reduction and number of adverse events. The significance of each attribute in influencing clinical decisions was the primary outcome and the degree to which GPs preferred the alternative based on the number of adverse events or the amount of pain reduction was the secondary outcome. RESULTS: Overall, GPs preferred NSAIDs (45.2%, 95% CI 38.7-51.7%) over opioids (28.8%, 95% CI 23.0-34.7%), however there was no difference between the type of NSAID or opioid preferred. Additionally, the attributes of pain reduction and adverse events did not influence a GP's choice between NSAIDs or opioids for patients with chronic LBP. CONCLUSION: GPs prefer prescribing NSAIDs over opioids for a patient with chronic low back pain regardless of patient factors of comorbidities or the presence of leg pain (i.e. sciatica).

Psychosocial outcomes and health service use after notifying women participating in population breast screening when they have dense breasts: a BreastScreen Queensland randomised controlled trial.

BACKGROUND: Robust evidence regarding the benefits and harms of notifying Australian women when routine breast screening identifies that they have dense breasts is needed for informing future mammography population screening practice and policy. OBJECTIVES: To assess the psychosocial and health services use effects of notifying women participating in population-based breast cancer screening that they have dense breasts; to examine whether the mode of communicating this information about its implications (print, online formats) influences these effects. METHODS AND ANALYSIS: The study population comprises women aged 40 years or older who attend BreastScreen Queensland Sunshine Coast services for mammographic screening and are found to have dense breasts (BI-RADS density C or D). The randomised controlled trial includes three arms (952 women each): standard BreastScreen care (no notification of breast density; control arm); notification of dense breasts in screening results letter and print health literacy-sensitive information (intervention arm 1) or a link or QR code to online video-based health literacy-sensitive information (intervention arm 2). Baseline demographic data will be obtained from BreastScreen Queensland. Outcomes data will be collected in questionnaires at baseline and eight weeks, twelve months, and 27 months after breast screening. Primary outcomes will be psychological outcomes and health service use; secondary outcomes will be supplemental screening outcomes, cancer worry, perceived breast cancer risk, knowledge about breast density, future mammographic screening intentions, and acceptability of notification about dense breasts. ETHICS APPROVAL: Gold Coast Hospital and Health Service Ethics Committee (HREC/2023/QGC/89770); Sunshine Coast Hospital and Health Service Research Governance and Development (SSA/2023/QSC/89770). DISSEMINATION OF FINDINGS: Findings will be reported in peer-reviewed journals and at national and international conferences. They will also be reported to BreastScreen Queensland, BreastScreen Australia, Cancer Australia, and other bodies involved in cancer care and screening, including patient and support organisations. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12623000001695p (prospective: 9 January 2023).

Websites Selling Direct-to-Consumer Anti-Mullerian Hormone Tests.

Importance: The recent provision of direct-to-consumer (DTC) Anti-Mullerian Hormone (AMH) testing in several countries has been contentious, particularly due to concerns about judicious testing and informed consent. Objective: To describe and analyze information on websites that sell DTC AMH tests. Design, Setting, and Participants: Qualitative study including content analysis of text information from websites in multiple countries that sell AMH tests DTC. The top 50 search results from 4 different internet search strings were captured and reviewed for eligibility. Data were extracted in March 2022 and analyzed from April 2022 to July 2023. Main outcomes and measures: Themes and categories were derived from the website content using a conventional inductive approach, with a particular focus on information content, quality and accuracy, as well as the tone and language used. Results: Twenty-seven websites across 7 different countries formed the sample for analysis. Information varied considerably across websites and was organized into 6 overarching categories: (1) whether a test description was included (25 websites [93%]); (2) statements about what the test can do, which included indicating ovarian reserve (26 websites [96%]) and indicating likelihood of conceiving (20 websites [74%]); (3) statements about the usefulness of the test result, which included enabling women to adjust their reproductive timeline (11 websites [41%]) and determining whether egg freezing was a viable option (8 websites [30%]); (4) blood collection method (ie, through a laboratory or an at-home sample); (5) promotion tactics, such as stating the convenience of testing (24 websites [89%]) and using language promoting empowerment and control (7 websites [26%]); and (6) statements about limitations of the test, which included polycystic ovary syndrome falsely inflating AMH levels (13 websites [48%]) and that it cannot accurately predict chances of conceiving (9 websites [33%]). Conclusion and relevance: In this qualitative study including content analysis, most websites selling DTC AMH tests included false and misleading claims which might lead consumers to purchase an AMH test in the belief that it can reliably predict fertility potential and age of menopause. Depending on the test result, this may in turn lead to misplaced anxiety or reassurance about one's fertility and modifications to subsequent conception or contraceptive plans and behavior.

Women's views about current and future management of Ductal Carcinoma in Situ (DCIS): A mixed-methods study.

Management of low-risk ductal carcinoma in situ (DCIS) is controversial, with clinical trials currently assessing the safety of active monitoring amidst concern about overtreatment. Little is known about general community views regarding DCIS and its management. We aimed to explore women's understanding and views about low-risk DCIS and current and potential future management options. This mixed-method study involved qualitative focus groups and brief quantitative questionnaires. Participants were screening-aged (50-74 years) women, with diverse socioeconomic backgrounds and no personal history of breast cancer/DCIS, recruited from across metropolitan Sydney, Australia. Sessions incorporated an informative presentation interspersed with group discussions which were audio-recorded, transcribed and analysed thematically. Fifty-six women took part in six age-stratified focus groups. Prior awareness of DCIS was limited, however women developed reasonable understanding of DCIS and the relevant issues. Overall, women expressed substantial support for active monitoring being offered as a management approach for low-risk DCIS, and many were interested in participating in a hypothetical clinical trial. Although some women expressed concern that current management may sometimes represent overtreatment, there were mixed views about personally accepting monitoring. Women noted a number of important questions and considerations that would factor into their decision making. Our findings about women's perceptions of active monitoring for DCIS are timely while results of ongoing clinical trials of monitoring are awaited, and may inform clinicians and investigators designing future, similar trials. Exploration of offering well-informed patients the choice of non-surgical management of low-risk DCIS, even outside a clinical trial setting, may be warranted.

Addressing Behavioral Barriers to COVID-19 Testing With Health Literacy-Sensitive eHealth Interventions: Results From 2 National Surveys and 2 Randomized Experiments.

BACKGROUND: Polymerase chain reaction (PCR) testing for COVID-19 was crucial in Australia's prevention strategy in the first 2 years of the pandemic, including required testing for symptoms, contact with cases, travel, and certain professions. However, several months into the pandemic, half of Australians were still not getting tested for respiratory symptoms, and little was known about the drivers of and barriers to COVID-19 PCR testing as a novel behavior at that time. OBJECTIVE: We aimed to identify and address COVID-19 testing barriers, and test the effectiveness of multiple eHealth interventions on knowledge for people with varying health literacy levels. METHODS: The intervention was developed in 4 phases. Phase 1 was a national survey conducted in June 2020 (n=1369), in which testing barriers were coded using the capability-opportunity-motivation-behavior framework. Phase 2 was a national survey conducted in November 2020 (n=2034) to estimate the prevalence of testing barriers and health literacy disparities. Phase 3 was a randomized experiment testing health literacy-sensitive written information for a wide range of barriers between February and March 2021 (n=1314), in which participants chose their top 3 barriers to testing to view a tailored intervention. Phase 4 was a randomized experiment testing 2 audio-visual interventions addressing common testing barriers for people with lower health literacy in November 2021, targeting young adults as a key group endorsing misinformation (n=1527). RESULTS: In phase 1, barriers were identified in all 3 categories: capability (eg, understanding which symptoms to test for), opportunity (eg, not being able to access a PCR test), and motivation (eg, not believing the symptoms are those of COVID-19). Phase 2 identified knowledge gaps for people with lower versus higher health literacy. Phase 3 found no differences between the intervention (health literacy-sensitive text for top 3 barriers) and control groups. Phase 4 showed that a fact-based animation or a TikTok-style video presenting the same facts in a humorous style increased knowledge about COVID-19 testing compared with government information. However, no differences were found for COVID-19 testing intentions. CONCLUSIONS: This study identified a wide range of barriers to a novel testing behavior, PCR testing for COVID-19. These barriers were prevalent even in a health system where COVID-19 testing was free and widely available. We showed that key capability barriers, such as knowledge gaps, can be improved with simple videos targeting people with lower health literacy. Additional behavior change strategies are required to address motivational issues to support testing uptake. Future research will explore health literacy strategies in the current context of self-administered rapid antigen tests. The findings may inform planning for future COVID-19 variant outbreaks and new public health emergencies where novel testing behaviors are required. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621000876897, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382318 ; Australian New Zealand Clinical Trials Registry ACTRN12620001355965, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380916&isReview=true.

"I haven't had that information, even though I think I'm really well-informed about most things": a qualitative focus group study on Australian women's understanding and views of potentially modifiable risk factors for breast cancer.

BACKGROUND: Building health literacy about potentially modifiable risk factors for breast cancer may help to empower women to make more informed decisions about their breast health; however there has been limited qualitative research on this topic. This study aimed to explore current knowledge, understanding and experience of potentially modifiable risk factors for breast cancer, and views on current and future communication strategies for this information and related interventions. METHODS: Qualitative study using online focus groups via Zoom in October-November 2022. A diverse sample of women from the Australian community aged 40-74 years were recruited. RESULTS: Fifty-one women from a range of socioeconomic backgrounds took part in nine focus groups. General knowledge of risk factors for breast cancer in the community is limited, particularly in relation to modifiable factors such as alcohol consumption and postmenopausal obesity, with many women describing feelings of 'shock' following this information. Women overwhelming believed that information on modifiable risk factors for breast cancer should be communicated more widely, however communication preferences for receiving this information varied. There was a strong preference amongst the women for a cascade of information which they believed may then help target greater number of women of all ages and backgrounds. Despite worry about long-term compliance, women also supported various lifestyle interventions which may help them and other women to reduce their overall risk. CONCLUSIONS: Findings from this study highlight the need for more widespread community communication and education about risk factors for breast, in particular potentially modifiable risk factors such as alcohol consumption and postmenopausal obesity. As breast screening programs in Australia and globally begin to evaluate the potential for risk-related screening this will provide an additional context for primary prevention, hence planning of messaging and piloting of lifestyle-related prevention strategies in breast cancer is needed now. Gaining an understanding of women's preferences for communication and forms of interventions is vital to ensure their engagement.

Should low-risk DCIS lose the cancer label? An evidence review.

BACKGROUND: Population mammographic screening for breast cancer has led to large increases in the diagnosis and treatment of ductal carcinoma in situ (DCIS). Active surveillance has been proposed as a management strategy for low-risk DCIS to mitigate against potential overdiagnosis and overtreatment. However, clinicians and patients remain reluctant to choose active surveillance, even within a trial setting. Re-calibration of the diagnostic threshold for low-risk DCIS and/or use of a label that does not include the word 'cancer' might encourage the uptake of active surveillance and other conservative treatment options. We aimed to identify and collate relevant epidemiological evidence to inform further discussion on these ideas. METHODS: We searched PubMed and EMBASE databases for low-risk DCIS studies in four categories: (1) natural history; (2) subclinical cancer found at autopsy; (3) diagnostic reproducibility (two or more pathologist interpretations at a single time point); and (4) diagnostic drift (two or more pathologist interpretations at different time points). Where we identified a pre-existing systematic review, the search was restricted to studies published after the inclusion period of the review. Two authors screened records, extracted data, and performed risk of bias assessment. We undertook a narrative synthesis of the included evidence within each category. RESULTS: Natural History (n = 11): one systematic review and nine primary studies were included, but only five provided evidence on the prognosis of women with low-risk DCIS. These studies reported that women with low-risk DCIS had comparable outcomes whether or not they had surgery. The risk of invasive breast cancer in patients with low-risk DCIS ranged from 6.5% (7.5 years) to 10.8% (10 years). The risk of dying from breast cancer in patients with low-risk DCIS ranged from 1.2 to 2.2% (10 years). Subclinical cancer at autopsy (n = 1): one systematic review of 13 studies estimated the mean prevalence of subclinical in situ breast cancer to be 8.9%. Diagnostic reproducibility (n = 13): two systematic reviews and 11 primary studies found at most moderate agreement in differentiating low-grade DCIS from other diagnoses. Diagnostic drift: no studies found. CONCLUSION: Epidemiological evidence supports consideration of relabelling and/or recalibrating diagnostic thresholds for low-risk DCIS. Such diagnostic changes would need agreement on the definition of low-risk DCIS and improved diagnostic reproducibility.

Low-risk prostate lesions: An evidence review to inform discussion on losing the "cancer" label.

BACKGROUND: Active surveillance (AS) mitigates harms from overtreatment of low-risk prostate lesions. Recalibration of diagnostic thresholds to redefine which prostate lesions are considered "cancer" and/or adopting alternative diagnostic labels could increase AS uptake and continuation. METHODS: We searched PubMed and EMBASE to October 2021 for evidence on: (1) clinical outcomes of AS, (2) subclinical prostate cancer at autopsy, (3) reproducibility of histopathological diagnosis, and (4) diagnostic drift. Evidence is presented via narrative synthesis. RESULTS: AS: one systematic review (13 studies) of men undergoing AS found that prostate cancer-specific mortality was 0%-6% at 15 years. There was eventual termination of AS and conversion to treatment in 45%-66% of men. Four additional cohort studies reported very low rates of metastasis (0%-2.1%) and prostate cancer-specific mortality (0%-0.1%) over follow-up to 15 years. Overall, AS was terminated without medical indication in 1%-9% of men. Subclinical reservoir: 1 systematic review (29 studies) estimated that the subclinical cancer prevalence was 5% at <30 years, and increased nonlinearly to 59% by >79 years. Four additional autopsy studies (mean age: 54-72 years) reported prevalences of 12%-43%. Reproducibility: 1 recent well-conducted study found high reproducibility for low-risk prostate cancer diagnosis, but this was more variable in 7 other studies. Diagnostic drift: 4 studies provided consistent evidence of diagnostic drift, with the most recent (published 2020) reporting that 66% of cases were upgraded and 3% were downgraded when using contemporary diagnostic criteria compared to original diagnoses (1985-1995). CONCLUSIONS: Evidence collated may inform discussion of diagnostic changes for low-risk prostate lesions.

A systematic review of the impact of the COVID-19 pandemic on breast cancer screening and diagnosis.

BACKGROUND: Breast cancer care has been affected by the COVID-19 pandemic. This systematic review aims to describe the observed pandemic-related changes in clinical and health services outcomes for breast screening and diagnosis. METHODS: Seven databases (January 2020-March 2021) were searched to identify studies of breast cancer screening or diagnosis that reported observed outcomes before and related to the pandemic. Findings were presented using a descriptive and narrative approach. RESULTS: Seventy-four studies were included in this systematic review; all compared periods before and after (or fluctuations during) the pandemic. None were assessed as being at low risk of bias. A reduction in screening volumes during the pandemic was found with over half of studies reporting reductions of ≥49%. A majority (66%) of studies reported reductions of ≥25% in the number of breast cancer diagnoses, and there was a higher proportion of symptomatic than screen-detected cancers. The distribution of cancer stage at diagnosis during the pandemic showed lower proportions of early-stage (stage 0-1/I-II, or Tis and T1) and higher proportions of relatively more advanced cases than that in the pre-pandemic period, however population rates were generally not reported. CONCLUSIONS: Evidence of substantial reductions in screening volume and number of diagnosed breast cancers, and higher proportions of advanced stage cancer at diagnosis were found during the pandemic. However, these findings reflect short term outcomes, and higher-quality research examining the long-term impact of the pandemic is needed.

Australian Women's Responses to Breast Density Information: A Content Analysis.

Breast density (BD) is an independent risk factor for breast cancer and reduces mammographic sensitivity. This study explored women's responses and intentions if notified that they had dense breasts. METHODS: Content analysis was used to assess responses from a written questionnaire undertaken in conjunction with focus groups on BD involving 78 Australian women aged 40-74. RESULTS: Half the women reported that they would feel a little anxious if notified they had dense breasts, while 29.5% would not feel anxious. The most common theme (29.5%) related to anxiety was the psychosocial impact of the possibility of developing cancer, and women believed that being better informed could help with anxiety (26.9%). When asked what they would do if notified of having dense breasts, the most common response was to consult their doctor for information/advice (38.5%), followed by considering supplemental screening (23%). Consequently, when asked directly, 65.4% were interested in undergoing supplemental screening, while others (10.3%) said they "wouldn't worry about it too much". DISCUSSION: These findings have important implications for health systems with population-based breast screening programs that are currently considering widespread BD notification in terms of the impact on women, health services and primary care.

Factors associated with women's supplemental screening intentions following dense breast notification in an online randomised experimental study.

Controversy surrounding recommendations for supplemental screening (ultrasound and magnetic resonance screening) in women with dense breasts exists, as the long-term benefits from these additional modalities may not outweigh the harms. This study aimed to examine factors associated with supplemental screening intentions following a hypothetical breast density notification in a population of women who have not been routinely notified. Australian women of breast screening age participated in an online randomised experimental study where they were presented with one of two breast density notifications (with or without health literacy-sensitive information) and asked their screening intentions. After adjusting for covariates in multivariable analyses, women in both groups (n = 940) who indicated higher levels of breast cancer worry, had private health insurance, had a family history of breast cancer, and had a greater number of times previously attending mammography screening had higher intentions for supplemental screening. Understanding women's supplemental screening intentions following notification of dense breasts has important implications for health systems with breast screening considering the impacts of widespread notification. Personal, clinical and psychological factors should be considered when discussing both the benefits and harms of supplemental screening with women with dense breasts.

Australian General Practitioners' Current Knowledge, Understanding, and Feelings Regarding Breast Density Information and Notification: A Cross-Sectional Study.

BACKGROUND: There is a lack of evidence around Australian general practitioners' (GPs) views of issues surrounding breast density. The current study aimed to quantitatively assess GPs' current knowledge, understanding, and feelings around breast density information and notification. METHODS: This study involved a cross-sectional survey using an online platform to collect quantitative data from Australian GPs. Survey data were analysed with descriptive statistics. RESULTS: A total 60 responses from GPs were analysed. Most (n = 58; 97%) had heard or read about breast density and nearly 90% (n = 52; 87%) have had discussions about breast density with patients. Three-quarters (n = 45; 75%) were supportive of making breast density notification mandatory for patients with dense tissue and a similar proportion (n = 45/58; 78%) felt they need or want more education on breast density. CONCLUSIONS: There is strong support for notifying patients of breast density, and interest in further education and training among the surveyed GPs. As GPs play a central role in cancer prevention and control, their involvement in discussions related to breast density notification, evaluation and appraisal of evidence, development of communication strategies, and participation in ongoing research on the topic will be indispensable.

Effects of awareness of breast cancer overdiagnosis among women with screen-detected or incidentally found breast cancer: a qualitative interview study.

OBJECTIVES: To explore experiences of women who identified themselves as having a possible breast cancer overdiagnosis. DESIGN: Qualitative interview study using key components of a grounded theory analysis. SETTING: International interviews with women diagnosed with breast cancer and aware of the concept of overdiagnosis. PARTICIPANTS: Twelve women aged 48-77 years from the UK (6), USA (4), Canada (1) and Australia (1) who had breast cancer (ductal carcinoma in situ n=9, (invasive) breast cancer n=3) diagnosed between 2004 and 2019, and who were aware of the possibility of overdiagnosis. Participants were recruited via online blogs and professional clinical networks. RESULTS: Most women (10/12) became aware of overdiagnosis after their own diagnosis. All were concerned about the possibility of overdiagnosis or overtreatment or both. Finding out about overdiagnosis/overtreatment had negative psychosocial impacts on women's sense of self, quality of interactions with medical professionals, and for some, had triggered deep remorse about past decisions and actions. Many were uncomfortable with being treated as a cancer patient when they did not feel 'diseased'. For most, the recommended treatments seemed excessive compared with the diagnosis given. Most found that their initial clinical teams were not forthcoming about the possibility of overdiagnosis and overtreatment, and many found it difficult to deal with their set management protocols. CONCLUSION: The experiences of this small and unusual group of women provide rare insight into the profound negative impact of finding out about overdiagnosis after breast cancer diagnosis. Previous studies have found that women valued information about overdiagnosis before screening and this knowledge did not reduce subsequent screening uptake. Policymakers and clinicians should recognise the diversity of women's perspectives and ensure that women are adequately informed of the possibility of overdiagnosis before screening.

Australian Women's Intentions and Psychological Outcomes Related to Breast Density Notification and Information: A Randomized Clinical Trial.

Importance: Whether the benefits of notifying women about breast density outweigh the potential harms to inform current and future mammogram screening practice remains unknown. Objective: To assess the effect of mammographic breast density notification and information provision on women's intention to seek supplemental screening and psychological outcomes. Design, Setting, and Participants: A 3-arm online randomized clinical trial was conducted from August 10 to 31, 2021. Data analysis was conducted from September 1 to October 20, 2021. Participants included Australian residents identifying as female, aged between 40 and 74 years, with no history of breast cancer who were residing in jurisdictions without existing breast density notification with screening mammograms. Interventions: Women were randomized to receive 1 of the following hypothetical breast screening test result letters: screening mammogram result letter without breast density messaging (control), screening mammogram result letter with breast density messaging and an existing density information letter taken from a screening service in Australia (intervention 1), and screening mammogram result letter with breast density messaging and a health literacy-sensitive version of the letter adapted for people with lower health literacy (intervention 2). Main Outcomes and Measures: Primary outcomes were intention to seek supplemental screening; feeling anxious (uneasy, worried, or nervous), informed, or confused; and having breast cancer worry. Results: A total of 1420 Australian women were randomized and included in the final analysis. The largest group consisted of 603 women aged 60 to 74 years (42.5%). Compared with the control cohort (n = 480), women who received density notification via intervention 1 (n = 470) and intervention 2 (n = 470) reported a significantly higher intention to seek supplemental screening (0.8% vs 15.6% and 14.2%; P < .001) and feeling anxious (14.2% vs 49.4% and 48.5%; P < .001), confusion (7.8% vs 24.0% and 23.6%; P < .001), and worry about breast cancer (quite/very worried: 6.9% vs 17.2% and 15.5%; P < .001). There were no statistically significant differences in these outcomes between the 2 intervention groups. Conclusions and Relevance: In this randomized clinical trial, breast density notification and information integrated with screening mammogram results increased women's intention to seek supplemental screening and made women feel anxious, confused, or worried about breast cancer. These findings have relevance and implications for mammogram screening services and policy makers considering whether and, if so, how best to implement widespread notification of breast density as part of mammography screening. Trial Registration: ACTRN12621000253808.