ObjectivesTo summarise and evaluate evidence from men who had not been diagnosed with prostate cancer about their perspectives on prostate care and prostate cancer.DesignA systematic review of qualitative research, on the perspectives of non-cancerous men regarding prostate cancer prevention and care.SettingA wide range of settings including primary and secondary care.ParticipantsMen from varied demographic backgrounds ranging between 40 to 80 years of age.Data sourcesThree databases (Ovid MEDLINE, Informit, PsychInfo) and Google Scholar were searched for peer-reviewed papers in English reporting research using qualitative methods (in-depth or semistructured interviews and focus groups).Review methodsThematic analysis using inductive and deductive codes. Thematic synthesis was achieved through iterative open, axial and thematic coding.ResultsEight papers (reporting seven studies conducted in Australia, UK and Germany) met inclusion criteria. Four major themes were identified: understanding prostate cancer, masculinity and prostate cancer, barriers to prostate healthcare and managing prostate health. It was reported that men often did not understand screening, prostate anatomy or their prostate cancer risk, and that concerns about masculinity could deter men from seeking health checks. There was evidence of a need to improve doctor–patient communication about case finding.ConclusionFurther investigation is required to identify and understand any differences in the perspectives and experiences of men who have not been diagnosed with prostate cancer in metropolitan and regional areas, especially where there may be variations in access to healthcare

To perform a systematic review and meta-analysis of the literature to understand the variation in the reporting of neuroendocrine staining and determine the influence of reporting neuroendocrine staining at diagnosis on patient outcomes. MethodsMedical databases were searched to identify studies in which adenocarcinoma specimens were stained with any of the following four neuroendocrine markers: chromogranin A (CgA), neuron-specific enolase (NSE), synaptophysin and CD56. The prevalence of neuroendocrine staining and correlation of the prevalence of neuroendocrine staining to patient outcomes were analysed using a random-effects model. All statistical tests were two-sided. ResultsSixty-two studies spanning 7616 patients were analysed. The pooled prevalence for the most common marker, CgA (41%), was similar to that of NSE (39%) and higher than that of synaptophysin (31%). The prevalence of CgA staining was significantly influenced by reporting criteria, where objective thresholds reduced the variation in prevalence to 26%. No correlation was found between CgA prevalence and tumour grade. Patients positive for CgA staining using objective criteria had more rapid biochemical progression (hazard ratio [HR] 1.98, 95% confidence interval [CI] 1.49 to 2.65) and poorer prostate cancer-specific survival (HR 7.03, 95% CI 2.55 to 19.39) compared to negative patients, even among those with low-risk cancers. ConclusionDiscrepancies in the reported prevalence of neuroendocrine cells in adenocarcinoma are driven by the inconsistent scoring criteria. This study unequivocally demonstrates that when neuroendocrine cell staining is assessed with objective criteria it identifies patients with poor clinical outcomes. Future studies are needed to determine the exact quantifiable thresholds for use in reporting neuroendocrine cell staining to identify patients at higher risk of progression.

Background: The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR. Methods: Eleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate). Results: Consensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site’s relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements. Conclusions: International collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.

Previous research in Victoria, Australia, found differences in prostate cancer outcomes in regional and metropolitan areas. This investigation of undiagnosed men in regional areas and a metropolitan area of South Australia sought their perspectives on prostate cancer. Our aim was to learn whether men who had not been diagnosed could shed light on why men outside metropolitan areas tended to have poorer outcomes than metropolitan men. Our goal was to build on evidence contributing to improving outcomes in prostate cancer care. Semi-structured interviews were designed to elicit explanation and meaning. 15 men (10 metropolitan, 5 regional) not diagnosed with prostate cancer were recruited through widely-distributed flyers in medical and community settings. Interviews were recorded and transcribed; transcripts were analysed thematically. Five main themes were identified, four of which were prompted by the questions: Addressing prostate health , Experiences with and expectations of GP s, Differences in care between regional and metropolitan areas , and Achieving early diagnosis . The fifth theme arose spontaneously: Australian masculinity . Men identified as problematic the limited availability of GPs in regional areas, the lack of consistency in approaches to prostate cancer detection, and men’s reluctance to seek medical care. Community-level strategies appear to be valued to encourage men to address prostate health. Maintaining and extending a systemic approach to prostate care may improve outcomes for men in Australia.

PURPOSE To detail the process for importing a defined data set into a centralized global registry via a secure file transfer platform and to understand the barriers to the establishment of a centralized global registry. RESULTS A bespoke solution was developed to allow transmission of data from international local data centers to a centralized repository. Data elements included in the import template were drawn from existing International Consortium for Health Outcome Measurement variables and refined to ensure accurate benchmarking as well as feasibility in data completeness. The data set was organized in accordance with the prostate cancer care trajectory. Key considerations in developing the data transfer platform included import file format, process of input validation, and technical provisions. Given the diversity in the legislation and ethical requirements with respect to consent, data handling, and cross-border data transfer across geographic locations, we encouraged each local data center to consult with its legal advisors and research ethics committee early on in the process. DISCUSSION A global collaboration, although highly valuable, posed many challenges because of inconsistent methods of data collection. User acceptance of a system is paramount to the success of establishing a metaregistry. Local information technology support and regular regression testing ensures quality and maintenance of the database. CONCLUSION We developed a Web-based system to facilitate the collection and secure storage of common data, which is scalable and secure. It is anticipated that through systematic recording of data, global standards of clinical practice and outcomes of care will see vast improvements.

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