What do you think overdiagnosis means? A qualitative analysis of responses from a national community survey of Australians

OBJECTIVE: Overdiagnosis occurs when someone is diagnosed with a disease that will not harm them. Against a backdrop of growing evidence and concern about the risk of overdiagnosis associated with certain screening activities, and recognition of the need to better inform the public about it, we aimed to ask what the Australian community understood overdiagnosis to mean. DESIGN, SETTING AND PARTICIPANTS: Content analysis of verbatim responses from a randomly sampled community telephone survey of 500 Australian adults, between January and February 2014. Data were analysed independently by two researchers. MAIN OUTCOME MEASURES: Analysis of themes arising from community responses to open-ended questions about the meaning of overdiagnosis. RESULTS: The sample was broadly representative of the Australian population. Forty per cent of respondents thought overdiagnosis meant exaggerating a condition that was there, diagnosing something that was not there or too much diagnosis. Twenty-four per cent described overdiagnosis as overprescribing, overtesting or overtreatment. Only 3% considered overdiagnosis meant doctors gained financially. No respondents mentioned screening in conjunction with overdiagnosis, and over 10% of participants were unable to give an answer. CONCLUSIONS: Around half the community surveyed had an approximate understanding of overdiagnosis, although no one identified it as a screening risk and a quarter equated it with overuse. Strategies to inform people about the risk of overdiagnosis associated with screening and diagnostic tests, in clinical and public health settings, could build on a nascent understanding of the nature of the problem

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

Breast density notification: Evidence on whether benefit outweighs harm is required to inform future screening practice

We believe that it is imperative to have robust evidence about whether to communicate breast density information to women and, if so, how best to do it. Before this happens, there first needs to be an assessment of the balance between the benefits and harms at the societal level. There is also a need for a better understanding of both the short-term and long-term effects that breast density notification have had on women in the USA. Developing an appropriate strategy for whether to and for whom to inform, including how to effectively notify women and communicate the potential benefits and harms of density information in other countries may still be feasible. This will take time, so for now, screening services and programmes could contribute through carefully planned research that assesses the impact of providing breast density information to women on both the societal and individual levels

How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: A randomised comparison within a national community survey

OBJECTIVE: There have been calls to remove ‘carcinoma’ from terminology for in situ cancers such as ductal carcinoma in situ (DCIS), to reduce overdiagnosis and overtreatment. We investigated the effect of describing DCIS as ‘abnormal cells’ versus ‘pre-invasive breast cancer cells’ on women's concern and treatment preferences. SETTING AND PARTICIPANTS: Community sample of Australian women (n=269) who spoke English as their main language at home. DESIGN: Randomised comparison within a community survey. Women considered a hypothetical scenario involving a diagnosis of DCIS described as either ‘abnormal cells’ (arm A) or ‘pre-invasive breast cancer cells’ (arm B). Within each arm, the initial description was followed by the alternative term and outcomes reassessed. RESULTS: Women in both arms indicated high concern, but still indicated strong initial preferences for watchful waiting (64%). There were no differences in initial concern or preferences by trial arm. However, more women in arm A (‘abnormal cells’ first term) indicated they would feel more concerned if given the alternative term (‘pre-invasive breast cancer cells’) compared to women in arm B who received the terms in the opposite order (67% arm A vs 52% arm B would feel more concerned, p=0.001). More women in arm A also changed their preference towards treatment when the terminology was switched from ‘abnormal cells’ to ‘pre-invasive breast cancer cells’ compared to arm B. In arm A, 18% of women changed their preference to treatment while only 6% changed to watchful waiting (p=0.008). In contrast, there were no significant changes in treatment preference in arm B when the terminology was switched (9% vs 8% changed their stated preference). CONCLUSIONS: In a hypothetical scenario, interest in watchful waiting for DCIS was high, and changing terminology impacted women's concern and treatment preferences. Removal of the cancer term from DCIS may assist in efforts towards reducing overtreatment

Public opinions about overdiagnosis:A national community survey

Despite evidence about the "modern epidemic" of overdiagnosis, and expanding disease definitions that medicalize more people, data are lacking on public views about these issues. Our objective was to measure public perceptions about overdiagnosis and views about financial ties of panels setting disease definitions.We conducted a 15 minute Computer Assisted Telephone Interview with a randomly selected community sample of 500 Australians in January 2014. We iteratively developed and piloted a questionnaire, with a convenience sample (n=20), then with participants recruited by a research company (n=20). Questions included whether respondents had been informed about overdiagnosis; opinions on informing people; and views about financial ties among panels writing disease definitions.Our sample was generally representative, but included a higher proportion of females and seniors, typical of similar surveys. American Association for Public Opinion Research response rate was 20% and cooperation rate was 44%. Only 10% (95% CI 8%-13%) of people reported ever being told about overdiagnosis by a doctor. 18% (95% CI 11%-28%) of men who reported having prostate cancer screening, and 10% (95% CI 6%-15%) of women who reported having mammography said they were told about overdiagnosis. 93% (95% CI 90%-95%) agreed along with screening benefits, people should be informed about overdiagnosis. On panels setting disease definitions, 78% (95% CI 74%-82%) felt ties to pharmaceutical companies inappropriate, and 91% (95% CI 82%-100%) believed panels should have a minority or no members with ties. Limitations included questionnaire novelty and complexity.A small minority of Australians surveyed, including those reporting being screened for prostate or breast cancer, reported being informed of overdiagnosis; most believed people should be informed; and a majority felt it inappropriate that doctors with ties to pharmaceutical companies write disease definitions. Results suggest strategies to better inform people about overdiagnosis, and review disease definition processes, have significant public sympathy

How information about overdetection changes breast cancer screening decisions: a mediation analysis within a randomised controlled trial

Objectives: In a randomised controlled trial, we found that informing women about overdetection changed their breast screening decisions. We now present a mediation analysis exploring the psychological pathways through which study participants who received the intervention processed information about overdetection and how this influenced their decision-making. We examined a series of potential mediators in the causal chain between exposure to overdetection information and women’s subsequently reported breast screening intentions. Design: Serial multiple mediation analysis within a randomised controlled trial. Setting: New South Wales, Australia. Participants: 811 women aged 48–50 years with no personal history of breast cancer. Interventions: Two versions of a decision aid giving women information about breast cancer deaths averted and false positives from mammography screening, either with (intervention) or without (control) information on overdetection. Main outcome: Intentions to undergo breast cancer screening in the next 2–3 years. Mediators: Knowledge about overdetection, worry about breast cancer, attitudes towards breast screening and anticipated regret. Results: The effect of information about overdetection on women’s breast screening intentions was mediated through multiple cognitive and affective processes. In particular, the information led to substantial improvements in women’s understanding of overdetection, and it influenced—both directly and indirectly via its effect on knowledge—their attitudes towards having screening. Mediation analysis showed that the mechanisms involving knowledge and attitudes were particularly important in determining women’s intentions about screening participation. Conclusions: Even in this emotive context, new information influenced women’s decision-making by changing their understanding of possible consequences of screening and their attitudes towards undergoing it. These findings emphasise the need to provide good-quality information on screening outcomes and to communicate this information effectively, so that women can make well-informed decisions. Trial registration number: This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ACTRN12613001035718) on 17 September 2013.This work was supported by the National Health and Medical Research Council of Australia through project grant number 1062389

Overdetection in breast cancer screening: Development and preliminary evaluation of a decision aid

Objective: To develop, pilot and refine a decision aid (ahead of a randomised trial evaluation) for women around age 50 facing their initial decision about whether to undergo mammography screening. Design: Two-stage mixed-method pilot study including qualitative interviews (n=15) and a randomised comparison using a quantitative survey (n=34). Setting: New South Wales, Australia. Participants: Women aged 43–59 years with no personal history of breast cancer. Interventions: The decision aid provides evidence-based information about important outcomes of mammography screening over 20 years (breast cancer mortality reduction, overdetection and false positives) compared with no screening. The information is presented in a short booklet for women, combining text and visual formats. A control version produced for the purposes of comparison omits the overdetection-related content. Outcomes: Comprehension of key decision aid content and acceptability of the materials. Results: Most women considered the decision aid clear and helpful and would recommend it to others. Nonetheless, the piloting process raised important issues that we tried to address in iterative revisions. Some participants found it hard to understand overdetection and why it is of concern, while there was often confusion about the distinction between overdetection and false positives. In a screening context, encountering balanced information rather than persuasion appears to be contrary to people’s expectations, but women appreciated the opportunity to become better informed. Conclusions: The concept of overdetection is complex and new to the public. This study highlights some key challenges for communicating about this issue. It is important to clarify that overdetection differs from false positives in terms of its more serious consequences (overtreatment and associated harms). Screening decision aids also must clearly explain their purpose of facilitating informed choice. A staged approach to development and piloting of decision aids is recommended to further improve understanding of overdetection and support informed decision-making about screening.National Health and Medical Research Counci

Impact of a diagnosis of polycystic ovary syndrome on diet, physical activity and contraceptive use in young women: findings from the Australian Longitudinal Study of Women's Health

Study question: Do diet, physical activity and contraceptive use change after receiving a diagnosis of polycystic ovary syndrome (PCOS)? Summary answer: Using longitudinal data 12\ua0months apart, young women newly diagnosed with PCOS were more likely to stop using contraception but did not change their physical activity or vegetable intake. What is known already: Diagnostic criteria for PCOS have widened to capture more women, despite limited evidence of the benefits and harms. Possible benefits of a PCOS diagnosis are that it may help women with family planning and motivate them to implement healthy lifestyle changes to reduce the reproductive, metabolic and cardiovascular risks associated with PCOS. However, there are no empirical studies investigating how women respond to a diagnosis of PCOS with respect to their health behaviour, and longitudinal population-based studies are lacking. Study design, size, duration: This is a longitudinal analysis of two waves of data collected 12\ua0months apart from the cohort born 1989-1995 in the Australian Longitudinal Survey on Women's Health, a population-based cohort study. Women in this cohort were first surveyed in 2012-2013, aged 18-23 years. Participants/materials, setting, methods: Women who responded to the 2014 survey (aged 19-24, n\ua0= 11 344) and 2015 survey (aged 20-25, n\ua0= 8961) were included. Using logistic regression, multinomial logistic regression and linear regression, change in vegetable intake, physical activity and contraceptive use were compared for women newly diagnosed with PCOS to women not reporting a diagnosis of PCOS. Changes in psychological distress and BMI were also examined. Main results and the role of chance: Young women reporting a new diagnosis of PCOS were no more likely to increase their vegetable intake or physical activity than women not reporting a PCOS diagnosis. Women newly diagnosed with PCOS were 3.4 times more likely to stop using contraception during the 12-month study period than women without PCOS (14% versus 4%, 95% CI = 2.3 to 5.1, P\ua