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.

Introduction:The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool.Methods: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive-content analysis.Results: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision-making and side-effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10%(n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision-making and side-effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal.

This study is the largest real-world cohort of patients with CKD and ESRD who underwent RP. The proportion of these patients is increasing, and they have significantly increased risks for postoperative problems. The analysis is limited by lack of pathologic/staging data in SPARCS.

BACKGROUND The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. OBJECTIVE To determine priority issues facing men with PCa, barriers and enablers to accessing care, format and organisation of information on a portal and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool within the portal. METHODS A qualitative action research study was conducted. Data collection comprised four online focus groups with HPs recruited from four healthcare services in Victoria (3 metropolitan, 1 regional) and seven online co-design workshops with men with PCa, recruited through the Prostate Cancer Outcomes Registry – Victoria, Prostate Cancer Foundation Australia, and the Cancer Council Victoria. We invited men’s support persons to one workshop. Men were eligible to participate if they had lived experience of PCa and access to the internet. Focus groups were analysed thematically. Workshops were analysed using descriptive-content analysis. RESULTS HPs (n=39) highlighted that men had shifting priorities over time but noted the importance of providing information to men in lay terms and in a variety of formats to assist in treatment decision-making and side effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO compactor tool received mixed support from HPs with 41% (n=16) supportive, 49% (n=19) unsure and 10% (n=4) not supportive. Men involved in workshops (n=28) ranged from 55 to 82 years of age. One workshop included five female support persons. Men identified informational needs to assist in treatment decision-making and side effect management as the top priority throughout care. Similar to HPs, support groups and practice nurses were described as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool into a portal. Men reported a preference for video and audio stories to deliver portal content. CONCLUSIONS Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. While slight variations in the perspectives of HPs and men with PCa concerning the barriers and enablers to accessing care exist, these can be addressed in a portal. Men with PCa already use online support resources and would welcome the development of a portal to centralise support information and a PRO comparator tool to prompt health-seeking behaviour. Future research should implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample.