Public Opinions about Overdiagnosis: A National Community Survey.
ABSTRACT: 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.
Project description:BACKGROUND:Financial ties between health professionals and industry may unduly influence professional judgments and some researchers have suggested that widening disease definitions may be one driver of over-diagnosis, bringing potentially unnecessary labeling and harm. We aimed to identify guidelines in which disease definitions were changed, to assess whether any proposed changes would increase the numbers of individuals considered to have the disease, whether potential harms of expanding disease definitions were investigated, and the extent of members' industry ties. METHODS AND FINDINGS:We undertook a cross-sectional study of the most recent publication between 2000 and 2013 from national and international guideline panels making decisions about definitions or diagnostic criteria for common conditions in the United States. We assessed whether proposed changes widened or narrowed disease definitions, rationales offered, mention of potential harms of those changes, and the nature and extent of disclosed ties between members and pharmaceutical or device companies. Of 16 publications on 14 common conditions, ten proposed changes widening and one narrowing definitions. For five, impact was unclear. Widening fell into three categories: creating "pre-disease"; lowering diagnostic thresholds; and proposing earlier or different diagnostic methods. Rationales included standardising diagnostic criteria and new evidence about risks for people previously considered to not have the disease. No publication included rigorous assessment of potential harms of proposed changes. Among 14 panels with disclosures, the average proportion of members with industry ties was 75%. Twelve were chaired by people with ties. For members with ties, the median number of companies to which they had ties was seven. Companies with ties to the highest proportions of members were active in the relevant therapeutic area. Limitations arise from reliance on only disclosed ties, and exclusion of conditions too broad to enable analysis of single panel publications. CONCLUSIONS:For the common conditions studied, a majority of panels proposed changes to disease definitions that increased the number of individuals considered to have the disease, none reported rigorous assessment of potential harms of that widening, and most had a majority of members disclosing financial ties to pharmaceutical companies. Please see later in the article for the Editors' Summary.
Project description:Women require information about the impact of regularly attending screening mammography on breast cancer mortality and overdiagnosis to make informed decisions. To provide this information we aimed to meta-analyse randomised controlled trials adjusted for adherence to the trial protocol.Nine screening mammography trials used in the Independent UK Breast Screening Report were selected. Extending an existing approach to adjust intention-to-treat (ITT) estimates for less than 100% adherence rates, we conducted a random-effects meta-analysis. This produced a combined deattenuated prevented fraction and a combined deattenuated percentage risk of overdiagnosis.In women aged 39-75 years invited to screen, the prevented fraction of breast cancer mortality at 13-year follow-up was 0.22 (95% CI 0.15-0.28) and it increased to 0.30 (95% CI 0.18-0.42) with deattenuation. In women aged 40-69 years invited to screen, the ITT percentage risk of overdiagnosis during the screening period was 19.0% (95% CI 15.2-22.7%), deattenuation increased this to 29.7% (95% CI 17.8-41.5%).Adjustment for nonadherence increased the size of the mortality benefit and risk of overdiagnosis by up to 50%. These estimates are more appropriate when developing quantitative information to support individual decisions about attending screening mammography.
Project description:Since 2013, Australian aid has been reduced and increasingly focused on delivering benefits to Australia. Motivated by these changes, this paper fills three gaps in the existing literature on public opinion about aid. It provides the only recent detailed study of Australians' opinions about aid. It studies specific policy questions in addition to the broader questions typical of international research. And it studies views on the purpose of aid, an area not previously researched. Although Australians are generally supportive of aid, most backed major aid cuts in 2015. However, most Australians think the purpose of Australian aid should be helping people in poor countries, not bringing benefits to Australia. There is a clear left-right divide in responses to all questions; however, some variables correlated with support for aid fail to explain variation in views about aid's purpose. The paper concludes by discussing ramifications for those who seek to change aid policy.
Project description:Importance:This study determines the prevalence of unilateral vision impairment (VI) and unilateral blindness to assist in policy formulation for eye health care services. Objective:To determine the prevalence and causes of unilateral VI and unilateral blindness in Australia. Design, Setting, and Participants:This cross-sectional population-based survey was conducted from March 2015 to April 2016 at 30 randomly selected sites across all strata of geographic remoteness in Australia. A total of 1738 indigenous Australians 40 years or older and 3098 nonindigenous Australians 50 years or older were included. Main Outcomes and Measures:The prevalence and causes of unilateral vision impairment and blindness, defined as presenting visual acuity worse than 6/12 and 6/60, respectively, in the worse eye, and 6/12 or better in the better eye. Results:Of the 1738 indigenous Australians, mean (SD) age was 55.0 (10.0) years, and 1024 participants (58.9%) were female. Among the 3098 nonindigenous Australians, mean (SD) age was 66.6 (9.7) years, and 1661 participants (53.6%) were female. The weighted prevalence of unilateral VI in indigenous Australians was 12.5% (95% CI, 11.0%-14.2%) and the prevalence of unilateral blindness was 2.4% (95% CI, 1.7%-3.3%), respectively. In nonindigenous Australians, the prevalence of unilateral VI was 14.6% (95% CI, 13.1%-16.3%) and unilateral blindness was found in 1.4% (95% CI, 1.0%-1.8%). The age-adjusted and sex-adjusted prevalence of unilateral vision loss was higher in indigenous Australians than nonindigenous Australians (VI: 18.7% vs 14.5%; P?=?.02; blindness: 2.9% vs 1.3%; P?=?.02). Risk factors for unilateral vision loss included older age (odds ratio [OR], 1.60 for each decade of age for indigenous Australians; 95% CI, 1.39-1.86; OR, 1.65 per decade for nonindigenous Australians; 95% CI, 1.38-1.96), very remote residence (OR, 1.65; 95% CI, 1.01-2.74) and self-reported diabetes (OR, 1.52; 95% CI, 1.12-2.07) for indigenous Australians, and having not undergone an eye examination in the past 2 years for nonindigenous Australians (OR, 1.54; 95% CI, 1.04-2.27). Uncorrected refractive error and cataract were leading causes of unilateral VI in both populations (70%-75%). Corneal pathology (16.7%) and cataract (13.9%) were leading causes of unilateral blindness in indigenous Australians, while amblyopia (18.8%), trauma (16.7%), and age-related macular degeneration (10.4%) were major causes of unilateral blindness in nonindigenous Australians. Conclusions and Relevance:Unilateral vision loss is prevalent in indigenous and nonindigenous Australians; however, most cases are avoidable. As those with unilateral vision loss caused by cataract and posterior segment diseases may be at great risk of progressing to bilateral blindness, national blindness prevention programs may benefit from prioritizing examination and treatment of those with unilateral vision loss.
Project description:Background:Limited information is available about hospitalization rates for cirrhosis in Australia. Methods:Using information on all hospital episodes of care for patients admitted to Queensland hospitals during 2008-2016, we report age-standardized hospitalization rates/10,000 person-years, in-hospital case-fatality rate among these admissions (n = 30,327), and examine the factors associated with hospital deaths using logistic regression analyses. Findings:Hospitalization rates increased from 8.50/10,000 (95% confidence interval (CI) 8.18-8.82) to 11.21/10,000 (95%CI 10.87-11.54) between 2008 and 2016, and peaked in men aged 55-59 years (34.03/10,000) and in Indigenous Australians (32.79/10,000). The number of admissions increased by 61.7% from 2701 admissions in 2008 to 4367 in 2016. During the same period, the percentage increase varied by socioeconomic disadvantage (3.2%/year in the most affluent vs. 9.4%/year in the most disadvantaged quintile; p < 0.001). Alcohol misuse was a contributing factor for cirrhosis in 55.1% of admissions, and socioeconomic disadvantage in 26.8%. The overall in-hospital case-fatality rate was 9.7% for males and 9.3% for females, and decreased in males (p < 0.001). Predictors of in-hospital mortality included hepatorenal syndrome (adjusted odds ratio (AOR) = 7.24, 95%CI 5.99-8.75), HCC (AOR = 2.53, 95%CI 2.20-2.91), hepatic encephalopathy (AOR = 1.94, 95%CI 1.61-2.34), acute peritonitis (AOR = 1.93, 95%CI 1.61-2.33), jaundice (AOR = 1.82, 95%CI 1.20-2.75), age ≥ 70 years (AOR = 1.63, 95%CI 1.38-1.92), a higher comorbidity index (p = 0.021), and residence outside of a "major city" (p < 0.001). Interpretation:The increasing healthcare use by Australians with cirrhosis has resource and economic implications. Our data highlight the disproportionate impact of cirrhosis on Indigenous Australians and people from the most socioeconomically disadvantaged areas. Funding:Brisbane Diamantina Health Partners.
Project description:While there is strong evidence of the need for healthy ageing programs for older Aboriginal Australians, few are available. It is important to understand older Aboriginal Australians' perspectives on healthy ageing in order to co-design culturally-appropriate programs, including views on technology use in this context. Semi-structured interviews were conducted with 34 Aboriginal Australians aged 50 years and older from regional and urban communities to explore participants' health concerns, preferences for healthy ageing programs, and receptiveness to technology. Qualitative data were analyzed using a grounded theory approach. This study found that older Aboriginal Australians are concerned about chronic health conditions, social and emotional well-being, and difficulties accessing health services. A range of barriers and enablers to participation in current health programs were identified. From the perspective of older Aboriginal people, a successful healthy ageing program model includes physical and cognitive activities, social interaction, and health education. The program model also provides culturally safe care and transport for access as well as family, community, cultural identity, and empowerment regarding ageing well as central tenets. Technology could also be a viable approach for program delivery. These findings can be applied in the implementation and evaluation of culturally-appropriate, healthy ageing programs with older Aboriginal people.
Project description:As whole-exome sequencing (WES) and whole-genome sequencing (WGS) move into routine clinical practice, it is timely to review data that might inform the debate regarding secondary findings (SF) and the development of policies that maximize participant benefit.We systematically searched for qualitative and quantitative studies that explored stakeholder views on SF in WES/WGS. Framework analysis was undertaken to identify major themes.Forty-four articles reporting the views of 11,566 stakeholders were included. Stakeholders were broadly supportive of returning "actionable" findings, but definitions of actionability varied. Stakeholder views on SF disclosure exist along a spectrum: potential WES/WGS recipients' views were largely influenced by a sense of rights, whereas views of genomics professionals were informed by a sense of professional responsibility. Experience with genetic illness and testing resulted in greater caution about SF, suggesting that truly informed decisions require an understanding of the implications and limitations of WES/WGS and possible findings.This review suggests that bidirectional interaction during consent might best facilitate informed decision making about SF and that dynamic forms of consent, allowing for changing preferences, should be considered. Research exploring views from wider perspectives and from recipients who have received SF is critical if evidence-based policies are to be achieved.Genet Med 19 3, 283-293.
Project description:OBJECTIVE:To elicit informed views from Australian women aged 70-74 regarding the acceptability of ceasing to invite women their age to participate in government-funded mammography screening (BreastScreen). DESIGN:Two community juries held in 2017. SETTING:Greater Sydney, a metropolis of 4.5?million people in New South Wales, Australia. PARTICIPANTS:34 women aged 70-74 with no personal history of breast cancer, recruited by random digit dialling and previously randomly recruited list-based samples. MAIN OUTCOMES AND MEASURES:Jury verdict and rationale in response to structured questions. We transcribed audio-recorded jury proceedings and identified central reasons for the jury's decision. RESULTS:The women's average age was 71.5 years. Participants were of diverse sociocultural backgrounds, with the sample designed to include women of lower levels of educational attainment. Both juries concluded by majority verdict (16-2 and 10-6) that BreastScreen should continue to send invitations and promote screening to their age group. Reasons given for the majority position include: (1) sending the invitations shows that society still cares about older women, empowers them to access preventive health services and recognises increasing and varied life expectancy; (2) screening provides women with information that enables choice and (3) if experts cannot agree, the conservative approach is to maintain the status quo until the evidence is clear. Reasons for the minority position were the potential for harms through overdiagnosis and misallocation of scarce health resources. CONCLUSIONS:Preventive programmes such as mammography screening are likely to have significant symbolic value once they are socially embedded. Arguments for programme de-implementation emphasising declining benefit because of limited life expectancy and the risks of overdiagnosis seem unlikely to resonate with healthy older women. In situations where there is no consensus among experts on the value of established screening programmes, people may strongly prefer receiving information about their health and having the opportunity make their own choices.
Project description:OBJECTIVE: To 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. DESIGN: Qualitative 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 discussions SETTING: Sydney, Australia PARTICIPANTS: Fifty women aged 40-79 years with no personal history of breast cancer and with varying levels of education and participation in screening. RESULTS: Prior 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. CONCLUSIONS: Women 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:Background:Prostate cancer diagnosis using the PSA test remains controversial because of overdiagnosis and overtreatment of potentially indolent cancers. There remains a need to increase the diagnostic lead time and to target treatment to patients with significant disease. One possible approach to overcome the limitations of PSA is to screen men for the molecular signature of early PCA, monitor the rate of disease progression and target treatment to patients who are likely to benefit from it. Such an approach requires a large panel of markers that define a molecular clock for PCA. We recently developed a panel of 19 markers for the non-invasive detection of PCA from urine DNA. It raised the possibility that additional methylation markers could be successfully analyzed from urine DNA, a prerequisite for increasing the diagnostic lead time and enabling disease monitoring. Methods:We developed semi-quantitative polymerase chain reaction assays for 13 additional markers and determined their methylation status in 150 urine DNAs from 94 patients with elevated PSA. Eighty five samples were obtained following DRE and 65 samples were from first void. We combined the data of the 13 new markers with the previously reported 19 markers and calculated the sensitivity, specificity, negative and positive predictive values at every threshold from one to 32 positive markers. Results:Using 10of32 positive markers as the threshold to recommend a biopsy yields a sensitivity of 81% (95% CI 0.68-0.93) and 93% (95% CI 0.84-1.02) and a specificity of 76% (95% CI 0.63-0.88) and 77% (95% CI 0.63-0.91) from DRE and FV DNA, respectively. The PPV was 71% and 77% and the NPV was 85% and 93% from DRE and FV, respectively. Conclusions:This study shows that large marker panels can be analyzed from urine DNA without loss of sensitivity or specificity. Using 32 markers improved the stratification of patients undergoing screening for PCA particularly for patients below the 10of32 threshold. The results show the utility of larger biomarker panels for PCA diagnosis and suggest that the development of the panels needed to monitor disease progression could be successfully accomplished.