General practitioners' experiences of providing somatic care for patients with severe mental illness: a qualitative study.

BACKGROUND: Patients dealing with severe mental illnesses (SMI) often face suboptimal clinical outcomes and higher mortality rates due to a range of factors, including undetected physical health conditions. The provision of care for individuals with SMI is frequently disjointed, as they engage with diverse healthcare providers. Despite this fragmentation, primary care, particularly general practitioners (GPs), assumes a pivotal role in the care of SMI patients. Our study aimed to delve into the first-hand experiences of GPs in delivering somatic care to SMI patients, concentrating on the challenges they encounter and the strategies they employ to navigate these difficulties. METHODS: We conducted in-depth interviews with fifteen GPs, utilizing a semi-structured interview guide, supplemented by ethnographic observations during clinical consultations in general practice. Through inductive coding, interview transcripts and observational field notes were systematically analysed using interpretative phenomenological analysis (IPA). The findings were then deliberated upon within the author group. RESULTS: GPs revealed that managing the chronic somatic care of SMI patients posed significant challenges. These challenges encompassed the multifaceted needs of patients, their behavior tied to symptoms, a lack of care continuity, and overarching time constraints. To tackle these challenges, the GPs had devised various strategies. However, all participants underscored the critical importance of having adequate time to properly prepare for, conduct, and follow up on consultations. CONCLUSION: The GPs' interactions with SMI patients brought numerous challenges, although treating these patients were concurrently acknowledged as vital and fulfilling. The findings suggest that increased allocated time in general practice consultations for patients with SMI is important to support the somatic treatment requirements of this patient group.

Deaths and cardiopulmonary events following colorectal cancer screening-A systematic review with meta-analyses.

BACKGROUND: Colorectal cancer screening programmes (CRCSPs) are implemented worldwide despite recent evidence indicating more physical harm occurring during CRCSPs than previously thought. Therefore, we aimed to review the evidence on physical harms associated with endoscopic diagnostic procedures during CRCSPs and, when possible, to quantify the risk of the most serious types of physical harm during CRCSPs, i.e. deaths and cardiopulmonary events (CPEs). METHODS: Systematic review with descriptive statistics and random-effects meta-analyses of studies investigating physical harms following CRCSPs. We conducted a systematic search in the literature and assessed the risk of bias and the certainty of the evidence. RESULTS: We included 134 studies for review, reporting findings from 151 unique populations when accounting for multiple screening interventions per study. Physical harm can be categorized into 17 types of harm. The evidence was very heterogeneous with inadequate measurement and reporting of harms. The risk of bias was serious or critical in 95% of assessments of deaths and CPEs, and the certainty of the evidence was very low in all analyses. The risk of death was assessed for 57 populations with large variation across studies. Meta-analyses indicated that 3 to 23 deaths occur during CRCSPs per 100,000 people screened. Cardiopulmonary events were assessed for 55 populations. Despite our efforts to subcategorize CPEs into 17 distinct subtypes, 41% of CPE assessments were too poorly measured or reported to allow quantification. We found a tendency towards lower estimates of deaths and CPEs in studies with a critical risk of bias. DISCUSSION: Deaths and CPEs during CRCSPs are rare, yet they do occur during CRCSPs. We believe that our findings are conservative due to the heterogeneity and low quality of the evidence. A standardized system for the measurement and reporting of the harms of screening is warranted. TRIAL REGISTRATION: PROSPERO Registration number CRD42017058844.

Rethinking the logic of early diagnosis in cancer.

To reduce morbidity and mortality of cancer, more countries have implemented strategies to detect cancer, based on the logic of 'the sooner the better'. Time is thereby an essential component in how cancer research, policies, and prevention are practiced today. Where the logic of early diagnosis benefits some, the logic also produces harms. In this article, we use a cross-disciplinary case-study design to discuss how different notions of time and linearity are essential in today's research ontology of cancer, describe the individual and societal consequences of such ontology, and invite a rethinking of time in cancer. Drawing on theoretical concepts of time together with cancer epidemiological, historical and ethnographical data, we analyse how the logic of early diagnosis has been established as a stable concept. Although evidence supporting the logic points in different directions, the message 'the sooner the better' is currently not being challenged by research, policy or society. This at least partly, can be explained by a linear perception of time and societal traces of neoliberalism and acceleration in our society together with cancer still being a somewhat enigmatic disease that requires acute action. To support a sustainable healthcare sector, we argue there is a need to nuance the logic of early diagnosis. Continuing the linear perception of symptoms and cancer, risks doing more harm than good by making more people patients unnecessarily and by spending health resources on those with the least need.

Speed, accuracy, and efficiency: The promises and practices of digitization in pathology.

Digitization is often presented in policy discourse as a panacea to a multitude of contemporary problems, not least in healthcare. How can policy promises relating to digitization be assessed and potentially countered in particular local contexts? Based on a study in Denmark, we suggest scrutinizing the politics of digitization by comparing policy promises about the future with practitioners' experience in the present. While Denmark is one of the most digitalized countries in the world, digitization of pathology has only recently been given full policy attention. As pathology departments are faced with an increased demand for pathology analysis and a shortage of pathologists, Danish policymakers have put forward digitization as a way to address these challenges. Who is it that wants to digitize pathology, why, and how does digitization unfold in routine work practices? Using online search and document analysis, we identify actors and analyze the policy promises describing expectations associated with digitization. We then use interviews and observations to juxtapose these expectations with observations of everyday pathology practices as experienced by pathologists. We show that policymakers expect digitization to improve speed, patient safety, and diagnostic accuracy, as well as efficiency. In everyday practice, however, digitization does not deliver on these expectations. Fulfillment of policy expectations instead hinges on the types of artificial intelligence (AI) applications that are still to be developed and implemented. Some pathologists remark that AI might work in the easy cases, but this would leave them with only the difficult cases, which they consider too burdensome. Our particular mode of juxtaposing policy and practice throws new light on the political work done by policy promises and helps to explain why the discipline of pathology does not seem to easily lend itself to the digital embrace.

Effectiveness of an adaptive, multifaceted intervention to enhance care for patients with complex multimorbidity in general practice: protocol for a pragmatic cluster randomised controlled trial (the MM600 trial).

INTRODUCTION: Patients with complex multimorbidity face a high treatment burden and frequently have low quality of life. General practice is the key organisational setting in terms of offering people with complex multimorbidity integrated, longitudinal, patient-centred care. This protocol describes a pragmatic cluster randomised controlled trial to evaluate the effectiveness of an adaptive, multifaceted intervention in general practice for patients with complex multimorbidity. METHODS AND ANALYSIS: In this study, 250 recruited general practices will be randomly assigned 1:1 to either the intervention or control group. The eligible population are adult patients with two or more chronic conditions, at least one contact with secondary care within the last year, taking at least five repeat prescription drugs, living independently, who experience significant problems with their life and health due to their multimorbidity. During 2023 and 2024, intervention practices are financially incentivised to provide an extended consultation based on a patient-centred framework to eligible patients. Control practices continue care as usual. The primary outcome is need-based quality of life. Outcomes will be evaluated using linear and logistic regression models, with clustering considered. The analysis will be performed as intention to treat. In addition, a process evaluation will be carried out and reported elsewhere. ETHICS AND DISSEMINATION: The trial will be conducted in compliance with the protocol, the Helsinki Declaration in its most recent form and good clinical practice recommendations, as well as the regulation for informed consent. The study was submitted to the Danish Capital Region Ethical Committee (ref: H-22041229). As defined by Section 2 of the Danish Act on Research Ethics in Research Projects, this project does not constitute a health research project but is considered a quality improvement project that does not require formal ethical approval. All results from the study (whether positive, negative or inconclusive) will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05676541.

Diagnostic flow for all patients referred with non-specific symptoms of cancer to a diagnostic centre in Denmark: A descriptive study.

BACKGROUND: Since 2012, Cancer Patient Pathways for Non-specific Symptoms and Signs of Cancer (NSSC-CPP) have been implemented in Scandinavia and UK. OBJECTIVES: This study aimed to describe the diagnostic flow for all patients referred from 1 January to 30 June 2020 to the NSSC-CPP in the Diagnostic Centre in Farsø (DC-F), Denmark. METHODS: During the study period, we prospectively recorded information on the diagnostic flow, including: pathway trajectory, symptoms and findings leading to referral, diagnostic procedures and diagnoses at the end of DC Farsø work-up and within 6-months for all patients referred to the NSSC-CPP in DC Farsø using electronic patient files and the Danish National Patient Registry (DNPR). RESULTS: Of the 314 referrals to DC Farsø, 227 had diagnostic work-up in DC Farsø, the remaining were redirected to other CPPs (n = 11), outpatient clinics (n = 45) or redirected to general practice (n = 25). Of total referrals, 25 (8%) received a malignant diagnosis, 20 (6%) a non-malignant but clinically relevant diagnosis with initiation of treatment, 16 (5%) a non-malignant diagnosis but no treatment needed and in 253 (81%) referrals no severe new condition was diagnosed. Two (1%) additional malignancies were diagnosed within a 6-month follow-up period. CONCLUSION: By tracking all patients referred to the NSSC-CPP in DC Farsø, including those redirected, this is the first study to describe the diagnostic flow for all patients referred to a diagnostic centre in Denmark. This knowledge is important for further organisation and planning of the NSSC-CPP.

Eight percent of NSSC-CPP referrals yielded cancer diagnoses, with two additional cancers diagnosed in a 6-month follow-up.Over one-fourth of referrals to NSSC-CPP were redirected to other departments or general practitioners.This study outlines the diagnostic flow for all NSSC-CPP-referred patients, offering unique insights crucial for comparing European diagnostic practices.

Barriers and facilitators to national guideline implementation for palliative cancer care in a Danish cross-sectoral healthcare setting: A qualitative study of healthcare professionals' experiences.

OBJECTIVE: Patients with incurable cancer should receive general palliative care according to their needs, as provided through collaboration between hospital departments, municipalities, and general practices and as outlined in national guidelines. However, the implementation of general palliative care in Denmark has been inadequate. This study aimed to investigate the healthcare professionals' (HCPs') perceptions on barriers to and facilitators of the implementation of the Danish National Guideline (NG) for general palliative care. METHODS: This descriptive, qualitative study was guided by the Consolidated Framework for Implementation Research (CFIR). Qualitative focus group and individual interviews were conducted with 23 HCPs. The interview guide, coding, analysis, and reporting of findings were developed within the CFIR framework. RESULTS: The main barriers to implementing NG were as follows: lack of knowledge about the NG, lack of an implementation plan, and insufficient communication and collaboration across sectors. Important facilitators were as follows: HCP motivation to meet palliative care needs, HCPs with special functions taking responsibility for incorporating NG into local guidelines, and the role of district nurses specialised in palliative care as opinion leaders providing security and continuity for the HCPs working in palliative care. CONCLUSIONS: To address the needs of patients with incurable cancer, greater efforts are required on implementing general palliative care. Although HCPs in our setting were motivated to improve NG implementation, financial resources and strategies are necessary to ensure sufficient knowledge uptake and accommodate identified barriers in order to translate the NG into practice.

Overdiagnosis in malignant melanoma: a scoping review.

OBJECTIVES: We aimed to systematically identify and scrutinise published empirical evidence about overdiagnosis in malignant melanoma and examine how frequent overdiagnosis of melanoma is and whether this is related to different types of interventions or diagnostic technologies. DESIGN AND SETTING: Empirical studies that discussed overdiagnosis in malignant melanoma were eligible, including qualitative and quantitative studies in any type of population, age group and geographical location. We excluded studies that did not include empirical data, studies that only mentioned 'overdiagnosis' without addressing it further and studies that used the term overdiagnosis for cases of misdiagnosis or false positives.We developed the search strategy in cooperation with an information specialist. We searched five databases on 21 April 2022: MEDLINE, Embase, CINAHL, PsycINFO and Cochrane Library.This scoping review adheres to The JBI methodology and Prefered Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping reviews (PRISMA-ScR). Two reviewers independently screened titles, abstracts and full texts for inclusion and extracted data from the included studies. The data extracted include study characteristics, population details, research question, the context and the study's main results. RESULTS: Our search resulted in 1134 potentially relevant studies. 35 studies were included: 29 register studies, 3 cohort studies, 1 case-control study, 1 survey study and 1 randomised controlled trial. Most register studies examined trends in melanoma incidence and/or mortality and found a significant increase in incidence between 0.39% and 6.6% annually and a little or no increase in mortality. Three cohort studies and one case-control study showed that skin screening was associated with increased detection of melanoma; especially in situ or thin invasive melanoma. Three studies estimated the degree of overdiagnosis which ranged from 29% to 60%. CONCLUSIONS: Epidemiological data suggest a high degree of overdiagnosis in malignant melanoma. Studies that examined the association between skin screening and malignant melanoma all found increased detection of melanomas, mostly thin and in situ melanomas, which raises concern about overdiagnosis.

Data driven or data informed? How general practitioners use data to evaluate their own and colleagues' clinical work in clusters.

In contemporary policy discourses, data are presented as key assets for improving health-care quality: policymakers want health care to become 'data driven'. In this article, we focus on a particular example of this ambition, namely a new Danish national quality development program for general practitioners (GPs) where doctors are placed in so-called 'clusters'. In these clusters, GPs are obliged to assess their own and colleagues' clinical quality with data derived from their own clinics-using comparisons, averages and benchmarks. Based on semi-structured interviews with Danish GPs and drawing on Science and Technology Studies, we explore how GPs understand these data, and what makes them trust-or question-a data analysis. The GPs describe how they change clinical practices based on these discussions of data. So, when and how do data for quality assurance come to influence their perceptions of quality? By exploring these issues, we carve out a role for a sociological engagement with evidence in everyday medical practices. In conclusion, we suggest a need to move from the aim of being data driven to one of being data informed.

The risk of bleeding and perforation from sigmoidoscopy or colonoscopy in colorectal cancer screening: A systematic review and meta-analyses.

INTRODUCTION: Physical harm from Colorectal Cancer Screening tends to be inadequately measured and reported in clinical trials. Also, studies of ongoing Colorectal Cancer Screening programs have found more frequent and severe physical harm from screening procedures, e.g., bleeding and perforation, than reported in previous trials. Therefore, the objectives of the study were to systematically review the evidence on the risk of bleeding and perforation in Colorectal Cancer Screening. DESIGN: Systematic review with descriptive statistics and random-effects meta-analyses. METHODS: We systematically searched five databases for studies investigating physical harms related to Colorectal Cancer Screening. We assessed the internal and the external validity using the ROBINS-I tool and the GRADE approach. Harm estimates was calculated using mixed Poisson regression models in random-effect meta-analyses. RESULTS: We included 89 studies. Reporting and measurement of harms was inadequate in most studies. In effect, the risk of bias was critical in 97.3% and serious in 98.3% of studies. All GRADE ratings were very low. Based on severe findings with not-critical risk of bias and 30 days follow-up, the risk of bleedings per 100,000 people screened were 8 [2;24] for sigmoidoscopy, 229 [129;408] for colonoscopy following fecal immunochemical test, 68 [39;118] for once-only colonoscopy, and 698 [443;1045] for colonoscopy following any screening tests. The risk of perforations was 88 [56;138] for colonoscopy following fecal immunochemical test and 53 [25;112] for once-only colonoscopy. There were no findings within the subcategory severe perforation with long-term follow-up for colonoscopy following any screening tests and sigmoidoscopy. DISCUSSION: Harm estimates varied widely across studies, reporting and measurement of harms was mostly inadequate, and the risk of bias and GRADE ratings were very poor, collectively leading to underestimation of harm. In effect, we consider our estimates of perforation and bleeding as conservative, highlighting the need for better reporting and measurement in future studies. TRIAL REGISTRATION: PROSPERO registration number: CRD42017058844.

Factors affecting point-of-care ultrasound implementation in general practice: a survey in Danish primary care clinics.

OBJECTIVE: The implementation of point-of-care ultrasound (POCUS) in general practice varies, but it is unknown what determines this variation. The purpose of this study was to explore (1) the overall proportion of POCUS-users among general practitioners (GPs), (2) the current use of POCUS by GPs, (3) factors related to the implementation of POCUS in general practice and (4) GPs' concerns related to POCUS use in general practice. DESIGN: An online survey was distributed in June 2019. SETTING: General practice. PARTICIPANTS: GPs working in office-based primary care clinics in Denmark. MAIN OUTCOME MEASURES: The questionnaire was developed using mixed methods and included questions about participants' characteristics, past POCUS training and experience, capability, opportunity and motivation for using POCUS in the primary care setting. Results were summarised using descriptive statistics. Association between GPs' background characteristics and POCUS use was tested using logistics regression. RESULTS: Responses were analysed from 1216 questionnaires corresponding to 36.4% of all GPs in Denmark. The majority (72.3%) of participants had previous POCUS experience, 14.7% had access to a POCUS device and 11.5% used POCUS. Several factors motivated participants to use POCUS. However, barriers existed such as lack of remuneration and high workload. Additionally, many GPs questioned their ability to scan with sufficient diagnostic accuracy and the impact of POCUS on the consultation. Of non-users, 28.7% believed they would be using POCUS in the future. CONCLUSION: Although, the majority of GPs had past experience with POCUS and felt motivated to use it, few had implemented POCUS. Several factors influenced the GPs' capability, opportunity and motivation for using POCUS and several concerns were registered by non-users.

Generating Items for Measuring Needs-Based Quality of Life and Self-Perceived Health Inequity in Patients with Multimorbidity: Development of the MultiMorbidity Questionnaire (MMQ).

Purpose: To describe the processes of developing domains and items for the MultiMorbidity Questionnaire (MMQ), a multimorbidity-specific PROM for the assessment of Needs-based QoL. Patients and Methods: We developed items and domains for the MMQ through 17 qualitative content validity questionnaire interviews with adults with multimorbidity by testing items from an item bank (covering items with content inspired by existing Needs-based QoL measures for single diseases). The interviews alternated between an explorative part and more focused cognitive interview techniques. Results: Testing the 47 items from the first draft of the MMQ items showed that the Needs-based approach as a framework did not cover all the QoL aspects our informants stated as being important. Therefore, the conceptual framework was supplemented by Self-perceived health inequity, and new items were generated. MMQ, measuring Needs-based QoL (MMQ1) and Self-perceived health inequity (MMQ2), was assembled. MMQ1 covers the domains: "Physical ability" (10 items), "Limitations in everyday life" (15 items), "Worries" (11 items), "My social life" (11 items), "Self-image" (12 items), and "Personal finances" (2 items). Self-perceived health inequity proved to be a relevant framework for other aspects of QoL not covered by the Needs-based approach to QoL. MMQ2 covers the domains: "Experiences of being stigmatized" (five items), "Experiences of not being seen and heard" (four items), "Insufficient understanding of the burden of disease" (three items) and "Experiences of feeling powerless" (five items). Conclusion: We have developed the final MMQ draft, a multimorbidity-specific PROM for the assessment of Needs-based QoL (MMQ1) and Self-perceived health inequity (MMQ2) with high content validity (regarding content relevance and comprehensiveness). The final MMQ draft will be assessed for its psychometric properties using Modern Test Theory.

Measuring needs-based quality of life and self-perceived health inequity in patients with multimorbidity: investigating psychometric measurement properties of the MultiMorbidity Questionnaire (MMQ) using primarily Rasch models.

BACKGROUND: Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interventions, an adequate patient-reported outcome measure (PROM) is essential. The aim of this study was to assess the draft MultiMorbidity Questionnaire (MMQ), a PROM measuring needs-based quality of life and self-perceived inequity in patients with multimorbidity, for its psychometric properties and to adjust it accordingly to create a content- and construct valid measure. METHODS: The draft MMQ was sent to 1198 eligible respondents with multimorbidity. Modern test theory and classical test theory were used to analyse data. Dimensionality of the suggested domains and invariance of the items were assessed through item analysis, examining the fit to a psychometric model. RESULTS: The psychometric analyses were based on responses from 390 patients with multimorbidity. In the MMQ1, measuring needs-based QoL, evidence of six unidimensional scales was confirmed: physical ability (6 items), worries (6 items), limitations in everyday life (10 items), my social life (6 items), self-image (6 items), and personal finances (3 items). The psychometric analyses of the MMQ2 outlined four unidimensional scales measuring the feeling of Self-perceived inequity in patients with multimorbidity: experiences of being stigmatised (4-5 items), Experiences of insufficient understanding of the burden of disease (3 items), Experiences of not being seen and heard (4 items), Experience of powerlessness (5 items). These scales are relevant for patients' with multimorbidity encounters with (1) their general pratitioner, (2) staff at their general practitioner's surgery, (3) healthcare professionals, (4) staff at the local authorities and (5) friends, family, and others. CONCLUSION: The MMQ, a QoL measure for patients living with multimorbidity has been validated: the MMQ1 is a condition-specific PROM with adequate psychometric properties designed to measure needs-based QoL. The MMQ2 measuring Self-perceived inequity, has also been found to possess adequate measurement properties; however due to the risk of type 2 error a revalidation of MMQ2 is suggested.

The SOFIA pilot study: assessing feasibility and fidelity of coordinated care to reduce excess mortality and increase quality of life in patients with severe mental illness in a general practice setting; a cluster-randomised pilot trial.

OBJECTIVE: To evaluate the feasibility and fidelity of implementing and assessing the SOFIA coordinated care program aimed at lowering mortality and increasing quality of life in patients with severe mental illness by improving somatic health care in general practice. DESIGN: A cluster-randomised, non-blinded controlled pilot trial. SETTING: General Practice in Denmark. INTERVENTION: The SOFIA coordinated care program comprised extended structured consultations carried out by the GP, group-based training of GPs and staff, and a handbook with information on signposting patients to relevant municipal, health, and social initiatives. PATIENTS: Persons aged 18 years or older with a diagnosis of psychotic, bipolar, or severe depressive disorder. MAIN OUTCOME MEASURES: We collected quantitative data on the delivery, recruitment and retention rates of practices and patients, and response rates of questionnaires MMQ and EQ-5D-5 L. RESULTS: From November 2020 to March 2021, nine practices were enrolled and assigned in a 2:1 ratio to the intervention group (n = 6) or control group (n = 3). Intervention group practices included 64 patients and Control practices included 23. The extended consultations were delivered with a high level of fidelity in the general practices; however, thresholds for collecting outcome measures, and recruitment of practices and patients were not reached. CONCLUSION: Our findings suggest that delivering the coordinated care program in a fully powered trial in primary care is likely feasible. However, the recruitment methodology requires improvement to ensure sufficient recruitment and minimize selective inclusion. TRIAL REGISTRATION: The date of pilot trial protocol registration was 05/11/2020, and the registration number is NCT04618250.

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.

The long-term psychosocial consequences of screen-detected ductal carcinoma in situ and invasive breast cancer.

OBJECTIVE: Ductal carcinoma in situ (DCIS) is a risk factor for invasive breast cancer (IBC). The prognosis of DCIS is considerably better than for IBC, yet women do not distinguish between the threat. We aimed to compare the psychosocial consequences of screen-detected DCIS and IBC, and to examine this comparison over time. METHODS: We surveyed a Danish mammography-screening cohort from 2004 to 2018. We assessed outcomes at six-time points: baseline, 1, 6, 18, 36 months, and 14 years after the screening. We measured psychosocial consequences with the Consequences Of Screening - Breast Cancer (COS-BC): a condition-specific questionnaire that is psychometrically validated and encompasses 14 psychosocial dimensions. We used weighted linear models with generalized estimating equations to compare responses between groups. We used a 1% level of significance. RESULTS: 170 out of 1309 women were diagnosed with breast cancer (13.0%). 23 were diagnosed with DCIS (13.5%) and 147 with IBC (86.5%). From baseline to six months after diagnosis, there were no significant differences between women with DCIS and IBC. However, mean scores indicated that IBC generally was more affected than DCIS. After six months, we observed that women with DCIS and IBC might be affected differently in the long term; mean scores and mean differences showed that IBC were more affected on some scales, while DCIS were on others. CONCLUSION: Overall, the DCIS and IBC experienced similar levels of psychosocial consequences. Women might benefit from renaming DCIS to exclude cancer nomenclature.

The impact of influences in a medical screening programme invitation: a randomized controlled trial.

BACKGROUND: Invitations to screening programmes may include influences that are intending to increase the participation rates. This study had two objectives: (i) to assess if different categories of influences had a significant effect on the intention to participate in a screening programme for a fictitious disease and (ii) whether participants were aware of the influences, and if the intention to participate was associated to this awareness. METHODS: A seven-armed randomized controlled trial. Six hundred passers-by were randomly allocated to receive one of seven pamphlets inviting to a fictitious screening programme (neutral, relative risk reductions, misrepresentation of harms, pre-booked appointment, recommendation of participation, fear appeals, all combined). Participants were surveyed to assess (i) intention to participate (ITP) in the screening programme and (ii) awareness of an exerted influence. Chi-squared test was used to calculate the effect of the influences on ITP and the association of ITP with indicating awareness of an exerted influence and correctly locating an influence. RESULTS: Five hundred and eighty-nine participants were included for analysis. ITP was significantly increased (P < 0.05) in three pamphlets (misrepresentation of harms, fear appeals, all combined) [adjusted odds ratio (OR) 4.84, 95% confidence interval (CI): 2.54-9.23; OR 2.45, 95% CI: 1.31-4.59; OR 9.02, 95% CI: 4.44-18.34]. A percentage of 60.0-78.3 participants did not indicate awareness. Awareness was associated with a decreased ITP for those who could locate the influence (OR 0.39, 95% CI: 0.21-0.72) and those who failed to locate the influence (OR 0.47, 95% CI: 0.30-0.74). CONCLUSION: The application of influences should be carefully considered for interventions where an informed choice is desired.

Questioning 'Informed Choice' in Medical Screening: The Role of Neoliberal Rhetoric, Culture, and Social Context.

Participation in medical screening programs is presented as a voluntary decision that should be based on an informed choice. An informed choice is often emphasized to rely on three assumptions: (1) the decision-maker has available information about the benefits and harms, (2) the decision-maker can understand and interpret this information, and (3) the decision-maker can relate this information to personal values and preferences. In this article, we empirically challenge the concept of informed choice in the context of medical screening. We use document analysis to analyze and build upon findings and interpretations from previously published articles on participation in screening. We find that citizens do not receive neutral or balanced information about benefits and harms, yet are exposed to manipulative framing effects. The citizens have high expectations about the benefits of screening, and therefore experience cognitive strains when informed about the harm. We demonstrate that decisions about screening participation are informed by neoliberal arguments of personal responsibility and cultural healthism, and thus cannot be regarded as decisions based on individual values and preferences independently of context. We argue that the concept of informed choice serves as a power technology for people to govern themselves and can be considered an implicit verification of biopower.

Long-term psychosocial consequences of false-positive screening mammography: a cohort study with follow-up of 12-14 years in Denmark.

OBJECTIVE: To compare the long-term psychosocial consequences of mammography screening among women with breast cancer, normal results and false-positive results. DESIGN: A matched cohort study with follow-up of 12-14 years. SETTING: Denmark from 2004 to 2019. PARTICIPANTS: 1170 women who participated in the Danish mammography screening programme in 2004-2005. INTERVENTION: Mammography screening for women aged 50-69 years. OUTCOME MEASURES: We assessed the psychosocial consequences with the Consequences Of Screening-Breast Cancer, a condition-specific questionnaire that is psychometrically validated and encompasses 14 psychosocial dimensions. RESULTS: Across all 14 psychosocial outcomes, women with false-positive results averagely reported higher psychosocial consequences compared with women with normal findings. Mean differences were statistically insignificant except for the existential values scale: 0.61 (95% CI (0.15 to 1.06), p=0.009). Additionally, women with false-positive results and women diagnosed with breast cancer were affected in a dose-response manner, where women diagnosed with breast cancer were more affected than women with false-positive results. CONCLUSION: Our study suggests that a false-positive mammogram is associated with increased psychosocial consequences 12-14 years after the screening. This study adds to the harms of mammography screening. The findings should be used to inform decision-making among the invited women and political and governmental decisions about mammography screening programmes.

Data as symptom: Doctors' responses to patient-provided data in general practice.

People are increasingly able to generate their own health data through new technologies such as wearables and online symptom checkers. However, generating data is one thing, interpreting them another. General practitioners (GPs) are likely to be the first to help with interpretations. Policymakers in the European Union are investing heavily in infrastructures to provide GPs access to patient measurements. But there may be a disconnect between policy ambitions and the everyday practices of GPs. To investigate this, we conducted semi-structured interviews with 23 Danish GPs. According to the GPs, patients relatively rarely bring data to them. GPs mostly remember three types of patient-generated data that patients bring to them for interpretation: heart and sleep measurements from wearables and results from online symptom checkers. However, they also spoke extensively about data work with patient queries concerning measurements from the GPs' own online Patient Reported Outcome system and online access to laboratory results. We juxtapose GP reflections on these five data types and between policy ambitions and everyday practices. These data require substantial recontextualization work before the GPs ascribe them evidential value and act on them. Even when they perceived as actionable, patient-provided data are not approached as measurements, as suggested by policy frameworks. Rather, GPs treat them as analogous to symptoms-that is to say, GPs treat patient-provided data as subjective evidence rather than authoritative measures. Drawing on Science and Technology Studies (STS) literature,we suggest that GPs must be part of the conversation with policy makers and digital entrepreneurs around when and how to integrate patient-generated data into healthcare infrastructures.