Prostate cancer screening in primary care: Doctors’ perspectives on prostate-specific antigen (PSA) screening of asymptomatic men in Australia and the United Kingdom

Screening for prostate cancer is a highly debated public health issue. The evidence base is contested, the prostate-specific antigen (PSA) test as a screening technology is limited, no medical body recommends a population screening program for prostate cancer screening, local authorities differ in the advice they offer on the value of PSA screening in clinical care, and the substantial harms associated with PSA screening are well documented. Decisions about PSA screening most commonly occur in consultation with a general practitioner (GP). This qualitative study was designed to explain how GPs understand, reason about, and use the PSA test to screen men for prostate cancer risk in primary care. Australia and the United Kingdom draw on the same evidence base for prostate cancer screening yet have notably different rates of PSA screening; they are the two locations of this research study. In this thesis I report on GP perspectives on PSA screening. Methods: This is an empirical study using grounded theory methodology. Data were generated from in-depth interviews with GPs in Australia and the United Kingdom, who make decisions about using or not using the PSA test as a screening tool. Analysis was developed through transcript coding and detailed memo writing, using constant comparison to develop insight and connections between concepts. The overall aim of the study was to gain an in-depth understanding of how and why clinicians use the PSA test to screen for prostate cancer in primary care. Main findings: This grounded theory study found that for Australian GPs on the frontline, decision making about PSA screening is extremely difficult and complex. There was extensive variation in the clinicians’ accounts of their screening behaviour. Different motivations (values and goals) of GPs, context of the clinic and specific clinical interactions, opportunity to trust, and responses to uncertainty, were central explanations for varied practice. GPs intuitively and/or explicitly drew from multiple, potentially 3 conflicting, types of knowledge (including that from the research evidence) - developed over time – to guide their screening decisions. The study included UK GPs as a comparison case to examine the place of past and present screening policy, and healthcare system structure and organisation in influencing and incentivising particular ways of practicing. The UK experience demonstrates that Australian screening practices are not inevitable – things can be done differently. Some Australian clinicians in this study experienced significant emotional and cognitive burden, as a result of making screening decisions under challenging conditions. The empirical chapters of the thesis focus on four key issues: managing the potential for overdiagnosis, responding to uncertainty, practice and policy context, and communicating about PSA screening. The Discussion chapter draws these findings together into a new explanatory model of GPs’ decision making about PSA screening. Conclusion: This research provides an in-depth comparative analysis of important drivers of prostate cancer screening reported from the perspective of GPs in two locations with diverse screening rates. The model produced provides an explanation of the complex and varied process of PSA screening in the two jurisdictions. Policy continues to evolve and attract substantial debate in this field in Australia. Given that past attempts to intervene in PSA screening practice in Australia seem to have had limited effect, a new approach that better reflects the complexity of this issue, including the range of drivers of current practice, seems warranted. These findings offer useful empirical guidance for future policy and practice, grounded in the experiences of clinicians

Primary goals, information-giving and men\u27s understanding: A qualitative study of Australian and UK doctors\u27 varied communication about PSA screening

Objectives: (1) To characterise variation in general practitioners’ (GPs’) accounts of communicating with men about prostate cancer screening using the prostate-specific antigen (PSA) test, (2) to characterise GPs’ reasons for communicating as they do and (3) to explain why and under what conditions GP communication approaches vary. Study design and setting: A grounded theory study. We interviewed 69 GPs consulting in primary care practices in Australia (n=40) and the UK (n=29). Results: GPs explained their communication practices in relation to their primary goals. In Australia, three different communication goals were reported: to encourage asymptomatic men to either have a PSA test, or not test, or alternatively, to support men to make their own decision. As well as having different primary goals, GPs aimed to provide different information (from comprehensive to strongly filtered) and to support men to develop different kinds of understanding, from population-level to ‘gist’ understanding. Taking into account these three dimensions (goals, information, understanding) and building on Entwistle et al’s Consider an Offer framework, we derived four overarching approaches to communication: Be screened, Do not be screened, Analyse and choose, and As you wish. We also describe ways in which situational and relational factors influenced GPs’ preferred communication approach. Conclusion: GPs’ reported approach to communicating about prostate cancer screening varies according to three dimensions—their primary goal, information provision preference and understanding sought—and in response to specific practice situations. If GP communication about PSA screening is to become more standardized in Australia, it is likely that each of these dimensions will require attention in policy and practice support interventions

"This illness diminishes me. What it does is like theft" : A qualitative meta-synthesis of people's experiences of living with asthma

ACKNOWLEDGEMENTS This review was funded through a Seed Grant from the Centre for Research Excellence in Severe Asthma, Australia. The Healthtalk resources included in the systematic review were produced by two of the co-authors on the systematic review (SK and LL). LL is supported by NIHR Oxford Biomedical Research Centre.Peer reviewedPublisher PD

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

General Practitioners’ Experiences of, and Responses to, Uncertainty in Prostate Cancer Screening : Insights from a Qualitative Study

Acknowledgments We thank the General Practitioners for their participation in this research. The project was funded by NHMRC grant 1023197. Stacy Carter is supported by NHMRC Career Development Fellowship 1032963. Funding: The project was funded by a National Health and Medical Research Council grant 1023197 (https://www.nhmrc.gov.au/). SMC and LR obtained funding and are CIs on the NHMRC funded project grant. SMC is supported by NHMRC Career Development Fellowship 1032963. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.Peer reviewedPublisher PD

Including Information on Overdiagnosis in Shared Decision Making : A Review of Prostate Cancer Screening Decision Aids

Publisher Copyright: © The Author(s) 2022.Background. Overdiagnosis is an accepted harm of cancer screening, but studies of prostate cancer screening decision aids have not examined provision of information important in communicating the risk of overdiagnosis, including overdiagnosis frequency, competing mortality risk, and the high prevalence of indolent cancers in the population. Methods. We undertook a comprehensive review of all publicly available decision aids for prostate cancer screening, published in (or translated to) the English language, without date restrictions. We included all decision aids from a recent systematic review and screened excluded studies to identify further relevant decision aids. We used a Google search to identify further decision aids not published in peer reviewed medical literature. Two reviewers independently screened the decision aids and extracted information on communication of overdiagnosis. Disagreements were resolved through discussion or by consulting a third author. Results. Forty-one decision aids were included out of the 80 records identified through the search. Most decision aids (n = 32, 79%) did not use the term overdiagnosis but included a description of it (n = 38, 92%). Few (n = 7, 17%) reported the frequency of overdiagnosis. Little more than half presented the benefits of prostate cancer screening before the harms (n = 22, 54%) and only 16, (39%) presented information on competing risks of mortality. Only 2 (n = 2, 5%) reported the prevalence of undiagnosed prostate cancer in the general population. Conclusion. Most patient decision aids for prostate cancer screening lacked important information on overdiagnosis. Specific guidance is needed on how to communicate the risks of overdiagnosis in decision aids, including appropriate content, terminology and graphical display. Most patient decision aids for prostate cancer screening lacks important information on overdiagnosis. Specific guidance is needed on how to communicate the risks of overdiagnosis.Peer reviewe

Fictitious cases as a methodology to discuss sensitive health topics in focus groups

Purpose: It can be challenging to research aspects of people’s health behaviour, attitudes, and emotions due to the sensitive nature of these topics. We aimed to develop a novel methodology for discussing sensitive health topics, and explore the effectiveness in focus groups using prostate cancer and screening as an example. Method: We developed a fictitious case and employed it as a projective technique in focus groups on prostate cancer and screening. The participants were men and their partners who lived in Denmark. Results: The technique encouraged emotional and cognitive openness in focus group discussions about the risk of prostate cancer, the benefits and harms of screening, and decision-making about screening. It appeared that using the fictitious case allowed the participants to personally distance themselves from the topic, project emotions onto the case, and thereby openly talk about their emotions. Conclusion: This article presents a methodological contribution to communication about sensitive topics in focus groups, using prostate cancer screening as an example. Further refinement of the methodology is needed to enable participants to transfer improvements in knowledge to their own decision about screening

Health, financial and environmental impacts of unnecessary vitamin D testing: a triple bottom line assessment adapted for healthcare

To undertake an assessment of the health, financial and environmental impacts of a well-recognised example of low-value care; inappropriate vitamin D testing. Design Combination of systematic literature search, analysis of routinely collected healthcare data and environmental analysis. Setting Australian healthcare system. Participants Population of Australia. Outcome measures We took a sustainability approach, measuring the health, financial and environmental impacts of a specific healthcare activity. Unnecessary vitamin D testing rates were estimated from best available published literature; by definition, these provide no gain in health outcomes (in contrast to appropriate/necessary tests). Australian population-based test numbers and healthcare costs were obtained from Medicare for vitamin D pathology services. Carbon emissions in kg CO2e were estimated using data from our previous study of the carbon footprint of common pathology tests. We distinguished between tests ordered as the primary test and those ordered as an add-on to other tests, as many may be done in conjunction with other tests. We conducted base case (8% being the primary reason for the blood test) and sensitivity (12% primary test) analyses. Results There were a total of 4 457 657 Medicare-funded vitamin D tests in 2020, on average one test for every six Australians, an 11.8% increase from the mean 2018–2019 total. From our literature review, 76.5% of Australia’s vitamin D tests provide no net health benefit, equating to 3 410 108 unnecessary tests in 2020. Total costs of unnecessary tests to Medicare amounted to >$A87 000 000. The 2020 carbon footprint of unnecessary vitamin D tests was 28 576 kg (base case) and 42 012 kg (sensitivity) CO2e, equivalent to driving ~160 000–230 000 km in a standard passenger car. Conclusions Unnecessary vitamin D testing contributes to avoidable CO2e emissions and healthcare costs. While the footprint of this example is relatively small, the potential to realise environmental cobenefits by reducing low-value care more broadly is significant

Accounts from developers of generic health state utility instruments explain why they produce different QALYs: a qualitative study

Purpose and setting: Despite the label generic health state utility instruments (HSUIs), empirical evidence shows that different HSUIs generate different estimates of Health-Related Quality of Life (HRQoL) in the same person. Once a HSUI is used to generate a QALY, the difference between HSUIs is often ignored, and decision-makers act as if \u27a QALY is a QALY is a QALY\u27. Complementing evidence that different generic HSUIs produce different empirical values, this study addresses an important gap by exploring how HSUIs differ, and processes that produced this difference. 15 developers of six generic HSUIs used for estimating the QOL component of QALYs: Quality of Well-Being (QWB) scale; 15 Dimension instrument (15D); Health Utilities Index (HUI); EuroQol EQ-5D; Short Form-6 Dimension (SF-6D), and the Assessment of Quality of Life (AQoL) were interviewed in 2012-2013. Principal findings: We identified key factors involved in shaping each instrument, and the rationale for similarities and differences across measures. While HSUIs have a common purpose, they are distinctly discrete constructs. Developers recalled complex developmental processes, grounded in unique histories, and these backgrounds help to explain different pathways taken at key decision points during the HSUI development. The basis for the HSUIs was commonly not equivalent conceptually: differently valued concepts and goals drove instrument design and development, according to each HSUI\u27s defined purpose. Developers drew from different sources of knowledge to develop their measure depending on their conceptualisation of HRQoL. Major conclusions/contribution to knowledge: We generated and analysed first-hand accounts of the development of the HSUIs to provide insight, beyond face value, about how and why such instruments differ. Findings enhance our understanding of why the six instruments developed the way they did, from the perspective of key developers of those instruments. Importantly, we provide additional, original explanation for why a QALY is not a QALY is not a QALY