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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.
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Atenção à Saúde , Neoplasias , Humanos , Pesquisa Qualitativa , Grupos Focais , Pessoal de Saúde , Dinamarca , Neoplasias/terapiaRESUMO
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.
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Clínicos Gerais , Humanos , Clínicos Gerais/psicologia , Dinamarca , Entrevistas como Assunto , Masculino , Feminino , Padrões de Prática Médica , Qualidade da Assistência à Saúde , Atitude do Pessoal de Saúde , Pesquisa Qualitativa , Garantia da Qualidade dos Cuidados de SaúdeRESUMO
PURPOSE: The existing knee-specific pediatric patient-reported outcome measures (PROMs) lack content and construct validity for children with anterior cruciate ligament (ACL) injury. This impairs their accuracy which can lead to false interpretations of data and inaccurate clinical guidelines. The purpose of this study was to develop a content-valid PROM for children with an ACL injury. METHODS: The process adhered to the COnsensus-based Standards for the selection of health Measurement INstruments guidelines for PROM development. Informants were children with ACL deficiency and sampled based on age, sex, and treatment. Semistructured interviews were conducted exploring themes within the International Classification of Functioning, Disability and Health model. Interviews continued beyond data saturation. By thematic analysis and by probing items from the adult PROM 'KNEES-ACL', new themes and items emerged. Content coverage, relevance and understandability were continuously evaluated. All interviews were recorded and transcribed verbatim. The NVivo 12 software was used for data analysis and coding of items. RESULTS: A PROM of 60 items across nine subscales was formed. From cognitive interviews, 19 new items emerged. Forty-one of 55 items from KNEES-ACL were endorsed as relevant; however, all required rewording to ensure understandability. Substantial differences in the psychosocial impact between adults and children were observed. The children experienced a more considerable negative psychosocial impact caused by a loss of participation in sports, lower self-confidence and loss of social networks. This resulted in four new domains. The physical issues were similar to adults, with few exceptions. CONCLUSION: The 'KIDS-KNEES-ACL' 1.0 (qualitative version) was developed. This version will be subjected to psychometric analysis, resulting in adequate measurement properties of the final KIDS-KNEES-ACL 2.0. As the only adequate pediatric ACL-specific PROM, its use in clinical trials and databases will enhance PROM data quality, and strengthen clinical guidelines and thus the treatment of children with ACL injury. LEVEL OF EVIDENCE: Not applicable.
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Background In Denmark, the Cancer Patient Pathway for Non-Specific Signs and Symptoms (NSSC-CPP) has been implemented with variations: in some areas, general practitioners (GPs) do the initial diagnostic work-up (GP paradigm); in other areas, patients are referred directly to the hospital (hospital paradigm). There is no evidence to suggest the most beneficial organisation. Therefore, this study aims to compare the occurrence of colon cancer and the risk of non-localised cancer stage between the GP and hospital paradigms.Material and Methods In this registry-based case-control study, we applied multivariable binary logistic regression models to estimate the odds ratios (OR) of colon cancer and non-localised stage associated with the GP paradigm and hospital paradigm. All cases and controls were assigned to a paradigm based on their diagnostic activity (CT scan or CPP) six months before the index date. As not all CT scans in the control group were part of the cancer work-up as a sensitivity analysis, we investigated the impact of varying the fraction of these, which were randomly removed using a bootstrap approach for inference.Results The GP paradigm was more likely to result in a cancer diagnosis than the hospital paradigm; ORs ranged from 1.91-3.15 considering different fractions of CT scans as part of cancer work-up. No difference was found in the cancer stage between the two paradigms; ORs ranged from 1.08-1.10 and were not statistically significant.Conclusion Patients in the GP paradigm were diagnosed with colon cancer more often, but we cannot conclude that the distribution of respectively localised or non-localised extent of disease is different from that of patients in the hospital paradigm.
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Neoplasias do Colo , Humanos , Estudos de Casos e Controles , Neoplasias do Colo/diagnóstico , Estadiamento de Neoplasias , Tomografia Computadorizada por Raios X , Sistema de RegistrosRESUMO
INTRODUCTION: In Denmark, women are discontinued from mammography screening at age 69 due to decreased likelihood of benefits and increased likelihood of harm. The risk of harm increases with age and includes false positives, overdiagnosis and overtreatment. In a questionnaire survey, 24 women expressed unsolicited concerns about being discontinued from mammography screening due to age. This calls for further investigation of experiences related to discontinuation from screening. METHODS: We invited the women, who had left comments on the questionnaire, to participate in in-depth interviews with the purpose to explore their reactions, preferences, and conceptions about mammography screening and discontinuation. The interviews lasted 1-4 h and were followed up with a telephone interview 2 weeks after the initial interview. RESULTS: The women had high expectations of the benefits of mammography screening and felt that participation was a moral obligation. Following that, they perceived the screening discontinuation as a result of societal age discrimination and consequently felt devalued. Further, the women perceived the discontinuation as a health threat, felt more susceptible to late diagnosis and death, and therefore sought out new ways to control their risk of breast cancer. CONCLUSION: Our findings indicate that the age-related discontinuation from mammography screening might be of more importance than previously assumed. This study raises important questions about screening ethics, and we encourage research to explore this in other settings. PATIENT AND PUBLIC CONTRIBUTION: This study was conducted as a result of the women's unsolicited concerns about being discontinued from screening. This particular group contributed to the study with their own statements, interpretations and perspectives on the discontinuation of screening, and the initial analysis of data was discussed with the women during follow-up interviews.
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Neoplasias da Mama , Mamografia , Humanos , Feminino , Programas de Rastreamento , Detecção Precoce de Câncer , Dinamarca , Pesquisa Qualitativa , Neoplasias da Mama/prevenção & controle , Fatores Etários , Etarismo , Discriminação Social , Idoso , Idoso de 80 Anos ou maisRESUMO
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.
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Intenção , Programas de Rastreamento , Humanos , Inquéritos e QuestionáriosRESUMO
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.
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Melanoma , Neoplasias Cutâneas , Humanos , Melanoma/diagnóstico , Melanoma/epidemiologia , Melanoma/patologia , Estudos de Casos e Controles , Sobrediagnóstico , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/patologia , Erros de DiagnósticoRESUMO
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.
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Medicina Geral , Neoplasias , Humanos , Medicina de Família e Comunidade , Neoplasias/diagnóstico , Encaminhamento e Consulta , DinamarcaRESUMO
BACKGROUND: Uncomplicated urinary tract infections (UTIs) in women are among the most common bacterial infections in primary care. Given the health threats related to the overuse of antibiotics, alternative options are of increasing importance. Patient-reported outcome measures are valuable tools for including the patients' perspective when evaluating the efficacy of these strategies. Aiming to identify a suitable instrument to measure the severity and bothersomeness of UTI symptoms in women, we performed a systematic review of the literature and identified the Holm and Cordoba Urinary Tract Infection Score (HCUTI), which measures the severity, bothersomeness, and impact of uncomplicated UTIs on daily activities. This instrument showed sufficient content validity but needs translation and further validation before it can be used in German research. OBJECTIVE: For use in the German setting, we aim (1) to perform translation and linguistic validation of the HCUTI and (2) to evaluate content validity and psychometric properties of the German version of the HCUTI in a population of women with uncomplicated UTIs. METHODS: The HCUTI will be translated and linguistically validated using the dual-panel method. This process involves a bilingual translation panel and a lay panel to check the comprehensibility of the translation. Content validity of the translated questionnaire will be assessed using cognitive interviews according to the criteria for good content validity as recommended by the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) group involving women with uncomplicated UTIs and health care professionals. Subsequent psychometric validation of the German version of the HCUTI in a population of women with uncomplicated UTIs will include the assessment of structural validity, internal consistency, test-retest reliability, construct validity, responsiveness, and interpretability. RESULTS: Results of the translation and linguistic validation process and the results of the content validity study were obtained in September 2023 and will be published separately. Data on the psychometric properties of the German version of the HCUTI are anticipated in mid-2024. CONCLUSIONS: We expect that data from the content validity study will provide important suggestions for potential modifications of the HCUTI for use in the German setting. The final version of the questionnaire will be used for the assessment of its psychometric properties in a large population of women with uncomplicated UTIs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/49903.
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Psicometria , Infecções Urinárias , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Alemanha , Psicometria/métodos , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Inquéritos e Questionários , Traduções , Infecções Urinárias/diagnóstico , Infecções Urinárias/tratamento farmacológico , Estudos de Validação como AssuntoRESUMO
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.
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Inteligência Artificial , Atenção à Saúde , Humanos , Segurança do PacienteRESUMO
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.
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Medicina Geral , Clínicos Gerais , Transtornos Mentais , Pessoas Mentalmente Doentes , Humanos , Transtornos Mentais/terapia , Pesquisa QualitativaRESUMO
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.
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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.
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Neoplasias Colorretais , Detecção Precoce de Câncer , Humanos , Neoplasias Colorretais/mortalidade , Neoplasias Colorretais/diagnóstico , Programas de Rastreamento/métodos , Doenças Cardiovasculares/mortalidade , Doenças Cardiovasculares/etiologiaRESUMO
INTRODUCTION: Many types of prostate cancer present minimal risk to a man's lifespan or well-being, but existing terminology makes it difficult for men to distinguish these from high-risk prostate cancers. This study aims to explore whether using an alternative label for low-risk prostate cancer influences management choice and anxiety levels among Australian men and their partners. METHODS AND ANALYSIS: We will run two separate studies for Australian men and Australian women with a male partner. Both studies are between-subjects factorial (3×2) randomised online hypothetical experiments. Following consent, eligible participants will be randomised 1:1:1 to three labels: 'low-risk prostate cancer, Gleason Group 1', 'low-risk prostate neoplasm' or 'low-risk prostate lesion'. Participants will then undergo a second randomisation step with 1:1 allocation to the provision of detailed information on the benefits and harms of different management choices versus the provision of less detailed information about management choices. The required sample sizes are 1290 men and 1410 women. The primary outcome is the participant choice of their preferred management strategy: no immediate treatment (prostate-specific antigen (PSA)-based monitoring or active surveillance using PSA, MRI, biopsy with delayed treatment for disease progression) versus immediate treatment (prostatectomy or radiation therapy). Secondary outcomes include preferred management choice (from the four options listed above), diagnosis anxiety, management choice anxiety and management choice at a later time point (for participants who initially choose a monitoring strategy). ETHICS AND DISSEMINATION: Ethics approval has been received from The University of Sydney Human Research Ethics Committee (2023/572). The results of the study will be published in a peer-reviewed medical journal and a plain language summary of the findings will be shared on the Wiser Healthcare publications page http://www.wiserhealthcare.org.au/category/publications/ TRIAL REGISTRATION NUMBERS: Australian New Zealand Clinical Trials Registry (ID 386701 and 386889).
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Neoplasias da Próstata , Humanos , Masculino , Neoplasias da Próstata/diagnóstico , Feminino , Austrália , Antígeno Prostático Específico/sangue , Ansiedade , Ensaios Clínicos Controlados Aleatórios como Assunto , Gradação de Tumores , Pessoa de Meia-Idade , Prostatectomia/métodos , Medição de Risco/métodos , Conduta Expectante/métodosRESUMO
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.
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Medicina Geral , Multimorbidade , Adulto , Humanos , Doença Crônica , Assistência Centrada no Paciente , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Ensaios Clínicos Pragmáticos como AssuntoRESUMO
In Denmark, due to the implementation of the Non-specific Symptoms and Signs of Cancer-Cancer Patient Pathway (NSSC-CPP), more people with symptoms such as fatigue and weight loss are informed that their symptoms might indicate cancer and they are referred to the pathway. But what do patients in the NSSC-CPP experience, in particular, with respect to being in an affective state of anticipation of a cancer diagnosis? We conducted participant observation and semi-structured interviews with patients to investigate their experience of the NSSC-CPP with a specific focus on their perception of symptoms and their thoughts on worrying about cancer. We found that the phrase 'worried about cancer' was not recognised by the participants, but worry was visible in their increased healthcare use and their interpretation of bodily sensations. Our study indicates the need to explore the impact of anticipation and potential cancer worries in participants' everyday lives, as this context mediates their moral roles and responsibilities and restructures their social lives, while keeping uncertainty and probabilities on the table.
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Neoplasias , Humanos , Negociação , Ansiedade , Emoções , Dinamarca , Pesquisa QualitativaRESUMO
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.
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Neoplasias da Mama , Mamografia , Feminino , Humanos , Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/psicologia , Estudos de Coortes , Seguimentos , Detecção Precoce de Câncer/psicologia , Reações Falso-Positivas , Dinamarca , Programas de RastreamentoRESUMO
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.
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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.