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Abstract Background A clinical quality registry (CQR) is a structured database that systematically collects data to monitor clinical quality and improve healthcare outcomes. The aims of CQRs are to improve treatment plans, assist in decision-making, increase healthcare value, enhance care quality, and reduce healthcare costs by providing feedback to healthcare providers. Feedback to clinicians is used as a quality improvement tool. It provides data to clinicians about their performance, which may contribute to improvement in healthcare outcomes. To the best of our knowledge, previous research on CQRs has primarily focused on factors affecting their use and their impact on healthcare outcomes. In this study, a scoping review is conducted to understand the barriers to and facilitators of using feedback systems from clinical quality registries in acute healthcare settings. Methods For this review, Arksey and O’Malley’s framework for scoping reviews will be applied. The following electronic databases (MEDLINE via Ovid, CINAHL, and Scopus) and grey literature (Google Scholar) will be systematically searched for qualitative and mixed-method studies (only including qualitative findings) published after 2000 in the English language. Two reviewers will independently screen the articles and extract the data which, subsequently, will be mapped against the COM-B model. Discussion This review is conducted with the aim of providing valuable insights into the factors that influence the utilisation of feedback from Clinical Quality Registries by healthcare providers, which, in the context of quality improvement, may have significant implications for clinical research, registry science, health policy, and clinical practice. Scoping review registration This protocol has been registered prospectively with the Open Science Framework (OSF) ( https://osf.io/fhm4n/ ).

Background: A clinical quality registry (CQR) is a structured database that systematically collects data to monitor clinical quality and improve healthcare outcomes. The aims of CQRs are to improve treatment plans, assist in decision-making, increase healthcare value, enhance care quality, and reduce healthcare costs by providing feedback to healthcare providers. Feedback to clinicians is used as a quality improvement tool. It provides data to clinicians about their performance, which may contribute to improvement in healthcare outcomes. To the best of our knowledge, previous research on CQRs has primarily focused on factors affecting their use and their impact on healthcare outcomes. In this study, a scoping review is conducted to understand the barriers to and facilitators of using feedback systems from clinical quality registries in acute healthcare settings. Methods: For this review, Arksey and O'Malley's framework for scoping reviews will be applied. The following electronic databases (MEDLINE via Ovid, CINAHL, and Scopus) and grey literature (Google Scholar) will be systematically searched for qualitative and mixed-method studies (only including qualitative findings) published after 2000 in the English language. Two reviewers will independently screen the articles and extract the data which, subsequently, will be mapped against the COM-B model. Discussion: This review is conducted with the aim of providing valuable insights into the factors that influence the utilisation of feedback from Clinical Quality Registries by healthcare providers, which, in the context of quality improvement, may have significant implications for clinical research, registry science, health policy, and clinical practice. Scoping review registration: This protocol has been registered prospectively with the Open Science Framework (OSF) (https://osf.io/fhm4n/). [ABSTRACT FROM AUTHOR]

Objective: To evaluate the management in Victorian general practice of people who have been hospitalised with stroke or transient ischaemic attacks (TIA). Study design: Retrospective observational study; analysis of linked Australian Stroke Clinical Registry (AuSCR) and general practice data. Setting: 383 general practices in the Eastern Melbourne, South Eastern Melbourne, and Gippsland primary health networks (Victoria), 1 January 2014 – 31 December 2018. Participants: Adults who had been hospitalised with acute stroke or TIA and had at least two encounters with the same general practice during the observation period (7–18 months after the acute event). Main outcome measures: Assessment of cardiometabolic risk factors (blood pressure, serum lipids, blood glucose, urinary protein); prescribing of guideline‐recommended prevention medications (blood pressure‐, lipid‐, or glucose‐lowering, antithrombotic agents); attainment of guideline targets for cardiometabolic risk factors at final assessment during observation period. Results: During 2014–2018, 3376 eligible AuSCR registrants (1465 women, 43.4%) had at least two encounters with one of the 383 general practices during the observation period; median age at stroke onset was 73.9 (interquartile range, 64.4–81.9) years, 737 events were TIAs (21.8%). Blood pressure was assessed in 2718 patients (80.5%), serum lipids in 1830 (54.2%), blood glucose in 1708 (50.6%). Prevention medications were prescribed for 2949 patients (87.4%), including lipid‐lowering (2427, 71.9%) and blood pressure‐lowering agents (2363, 70.0%). Blood glucose targets had been achieved by 1346 of 1708 patients assessed for this risk factor (78.8%), blood pressure targets by 1935 of 2717 (71.2%), and serum lipid targets by 765 of 1830 (41.8%). The incidence of having risk factors assessed was lower among patients aged 60 years or younger (incidence rate ratio [IRR], 0.97; 95% confidence interval [CI], 0.92–1.03) and those over 80 years of age (IRR, 0.92; 95% CI 0.88–0.97) than for those aged 61–80 years, and for women (IRR, 0.91; 95% CI, 0.87–0.95) and people with dementia (IRR, 0.89; 95% CI, 0.81–0.98). The likelihood of having classes of prevention medication prescribed was lower for patients aged 60 years or younger (IRR, 0.92; 95% CI, 0.88–0.97) and those over 80 years of age (IRR, 0.96; 95% CI, 0.92–0.997) than for patients aged 61–80 years, and for women (IRR, 0.95; 95% CI, 0.91–0.98) and people with dementia (IRR, 0.88; 95% CI, 0.78–0.98). Conclusions: The general practice management of people who have been hospitalised with stroke or TIA could be improved. Effective monitoring of cardiometabolic risk factors will enable general practitioners to optimise care for people who need careful attention to prevent adverse secondary events. [ABSTRACT FROM AUTHOR]

Abstract As medical treatment increasingly focuses on improving health-related quality of life, patient-reported outcome measures (PROMs) are an essential component of clinical research. The National Gynae-Oncology Registry (NGOR) is an Australian clinical quality registry. A suitable PROM was required for the NGOR ovarian cancer module to complement clinical outcomes and provide insights into outcomes important to patients. Our narrative review aimed to identify existing ovarian cancer-specific PROMs and ascertain which tool would be most appropriate for implementation into the NGOR ovarian cancer module. A literature review of Cochrane Library, Embase, MEDLINE and PubMed databases was performed to identify existing ovarian cancer-specific PROM tools. A steering committee was convened to (1) determine the purpose of, and criteria for our required PROM; and (2) to review the available tools against the criteria and recommend the most appropriate one for implementation within the NGOR. The literature review yielded five tools: MOST, EORTC QLQ-OV28, FACIT-O, NFOSI-18 and QOL-OVCA. All were developed and validated for use in clinical trials, but none had been validated for use in clinical quality registry. Our expert steering committee pre-determined purpose of a PROM tool for use within the NGOR was to enable cross-service comparison and benchmarking to drive quality improvements. They identified that while there was no ideal, pre-existing, ovarian cancer-specific PROM tool for implementation into the NGOR, on the basis of its psychometric properties, its available translations, its length and its ability to be adapted, the EORTC tool is most fit-for-purpose for integration into the NGOR. This process enabled identification of the tool most appropriate to provide insights into how ovarian cancer treatments impact patients’ quality of life and permit benchmarking across health services.

Abstract Background Stroke affects long-term physical and cognitive function; many survivors report unmet health needs, such as pain or depression. A hospital-led follow-up service designed to address ongoing health problems may avoid unplanned readmissions and improve quality of life. Methods This paper outlines the protocol for a registry-based, randomised controlled trial with allocation concealment of participants and outcome assessors. Based on an intention-to-treat analysis, we will evaluate the feasibility, acceptability, potential effectiveness and cost implications of a new tailored, codesigned, hospital-led follow-up service for people within 6–12 months of stroke. Participants (n = 100) from the Australian Stroke Clinical Registry who report extreme health problems on the EuroQol EQ-5D-3L survey between 90 and 180 days after stroke will be randomly assigned (1:1) to intervention (follow-up service) or control (usual care) groups. All participants will be independently assessed at baseline and 12–14-week post-randomisation. Primary outcomes for feasibility are the proportion of participants completing the trial and for intervention participants the proportion that received follow-up services. Acceptability is satisfaction of clinicians and participants involved in the intervention. Secondary outcomes include effectiveness: change in extreme health problems (EQ-5D-3L), unmet needs (Longer-term Unmet Needs questionnaire), unplanned presentations and hospital readmission, functional independence (modified Rankin Scale) and cost implications estimated from self-reported health service utilisation and productivity (e.g. workforce participation). To inform future research or implementation, the design contains a process evaluation including clinical protocol fidelity and an economic evaluation. Discussion The results of this study will provide improved knowledge of service design and implementation barriers and facilitators and associated costs and resource implications to inform a future fully powered effectiveness trial of the intervention. Trial registration ACTRN12622001015730pr. Trial sponsor Florey Institute of Neuroscience and Mental Health, 245 Burgundy Street, Heidelberg, VIC, 3084, PH: +61 3 9035 7032

Introduction The Australasian Pelvic Floor Procedure Registry (APFPR) was established in 2019 to monitor safety and efficacy of pelvic floor procedures (PFP) that use prostheses. This followed increased international and Australian regulation of mesh for PFPs, resulting in an overall reduction in PFPs and changes to the procedure profile. The aim of this study was to determine contributing factors and clinician responses to clinical practice trends, and implications for the APFPR. Methods An online clinician survey was developed and distributed between July and October 2022 to APFPR contributing clinicians and USANZ and UGSA members. Descriptive statistics were calculated and stratified analysis performed. Results Seventy-nine valid responses were received. Approximately two-thirds of respondents reported a decline in procedures to implant mesh slings; forty percent reported a decline in mesh sacrocolpopexy; and 40% and 50% reported an increase in explantations of mesh used for stress urinary incontinence (SUI) and pelvic organ prolapse (POP) respectively. Contributing factors for SUI procedure changes were patient preference (83%) and litigation concerns (59%), for POP procedures it was mesh non-availability (81%). Clinician responses included changing to other procedures (SUI 54%; POP 71%); conservative management (SUI 17%); and upskilling and onward referral (14%, 10%) for POP. Responses varied by specialty group. A majority recommended adding native tissue SUI procedures to the APFPR. Conclusion The survey provides insights into the impact and implications of the reduction in pelvic prostheses over the last 5 years. The addition of native tissue SUI procedures to the APFPR will ensure it maintains clinical relevance in a changing landscape. [ABSTRACT FROM AUTHOR]

Background: Stroke affects long-term physical and cognitive function; many survivors report unmet health needs, such as pain or depression. A hospital-led follow-up service designed to address ongoing health problems may avoid unplanned readmissions and improve quality of life. Methods: This paper outlines the protocol for a registry-based, randomised controlled trial with allocation concealment of participants and outcome assessors. Based on an intention-to-treat analysis, we will evaluate the feasibility, acceptability, potential effectiveness and cost implications of a new tailored, codesigned, hospital-led follow-up service for people within 6–12 months of stroke. Participants (n = 100) from the Australian Stroke Clinical Registry who report extreme health problems on the EuroQol EQ-5D-3L survey between 90 and 180 days after stroke will be randomly assigned (1:1) to intervention (follow-up service) or control (usual care) groups. All participants will be independently assessed at baseline and 12–14-week post-randomisation. Primary outcomes for feasibility are the proportion of participants completing the trial and for intervention participants the proportion that received follow-up services. Acceptability is satisfaction of clinicians and participants involved in the intervention. Secondary outcomes include effectiveness: change in extreme health problems (EQ-5D-3L), unmet needs (Longer-term Unmet Needs questionnaire), unplanned presentations and hospital readmission, functional independence (modified Rankin Scale) and cost implications estimated from self-reported health service utilisation and productivity (e.g. workforce participation). To inform future research or implementation, the design contains a process evaluation including clinical protocol fidelity and an economic evaluation. Discussion: The results of this study will provide improved knowledge of service design and implementation barriers and facilitators and associated costs and resource implications to inform a future fully powered effectiveness trial of the intervention. Trial registration: ACTRN12622001015730pr. Trial sponsor: Florey Institute of Neuroscience and Mental Health, 245 Burgundy Street, Heidelberg, VIC, 3084, PH: +61 3 9035 7032 [ABSTRACT FROM AUTHOR]

Purpose: To determine the relationship between three postoperative physiotherapy activities (time to first postoperative walk, activity on the day after surgery, and physiotherapy frequency), and the outcomes of hospital length of stay (LOS) and discharge destination after hip fracture. Methods: A cohort study was conducted on 437 hip fracture surgery patients aged ≥ 50 years across 36 participating hospitals from the Australian and New Zealand Hip Fracture Registry Acute Rehabilitation Sprint Audit during June 2022. Study outcomes included hospital LOS and discharge destination. Generalised linear and logistic regressions were used respectively, adjusted for potential confounders. Results: Of 437 patients, 62% were female, 56% were aged ≥ 85 years, 23% were previously living in a residential aged care facility, 48% usually walked with a gait aid, and 38% were cognitively impaired prior to their injury. The median acute and total LOS were 8 (IQR 5–13) and 20 (IQR 8–38) days. Approximately 71% (n = 179/251) of patients originally living in private residence returned home and 29% (n = 72/251) were discharged to a residential aged care facility. Previously mobile patients had a higher total LOS if they walked day 2–3 (10.3 days; 95% CI 3.2, 17.4) or transferred with a mechanical lifter or did not get out of bed day 1 (7.6 days; 95% CI 0.6, 14.6) compared to those who walked day 1 postoperatively. Previously mobile patients from private residence had a reduced odds of return to private residence if they walked day 2–3 (OR 0.38; 95% CI 0.17, 0.87), day 4 + (OR 0.38; 95% CI 0.15, 0.96), or if they only sat, stood or stepped on the spot day 1 (OR 0.29; 95% CI 0.13, 0.62) when compared to those who walked day 1 postoperatively. Among patients from private residence, each additional physiotherapy session per day was associated with a -2.2 (95% CI -3.3, -1.0) day shorter acute LOS, and an increased log odds of return to private residence (OR 1.76; 95% CI 1.02, 3.02). Conclusion: Hip fracture patients who walked earlier, were more active day 1 postoperatively, and/or received a higher number of physiotherapy sessions were more likely to return home after a shorter LOS. [ABSTRACT FROM AUTHOR]

As medical treatment increasingly focuses on improving health-related quality of life, patient-reported outcome measures (PROMs) are an essential component of clinical research. The National Gynae-Oncology Registry (NGOR) is an Australian clinical quality registry. A suitable PROM was required for the NGOR ovarian cancer module to complement clinical outcomes and provide insights into outcomes important to patients. Our narrative review aimed to identify existing ovarian cancer-specific PROMs and ascertain which tool would be most appropriate for implementation into the NGOR ovarian cancer module. A literature review of Cochrane Library, Embase, MEDLINE and PubMed databases was performed to identify existing ovarian cancer-specific PROM tools. A steering committee was convened to (1) determine the purpose of, and criteria for our required PROM; and (2) to review the available tools against the criteria and recommend the most appropriate one for implementation within the NGOR. The literature review yielded five tools: MOST, EORTC QLQ-OV28, FACIT-O, NFOSI-18 and QOL-OVCA. All were developed and validated for use in clinical trials, but none had been validated for use in clinical quality registry. Our expert steering committee pre-determined purpose of a PROM tool for use within the NGOR was to enable cross-service comparison and benchmarking to drive quality improvements. They identified that while there was no ideal, pre-existing, ovarian cancer-specific PROM tool for implementation into the NGOR, on the basis of its psychometric properties, its available translations, its length and its ability to be adapted, the EORTC tool is most fit-for-purpose for integration into the NGOR. This process enabled identification of the tool most appropriate to provide insights into how ovarian cancer treatments impact patients' quality of life and permit benchmarking across health services. [ABSTRACT FROM AUTHOR]

Background and purpose: The Registry of Stroke Care Quality (RES‐Q) is a worldwide quality improvement data platform that captures performance and quality measures, enabling standardized comparisons of hospital care. The aim of this study was to determine if, and how, RES‐Q data are used to influence stroke quality improvement and identify the support and educational needs of clinicians using RES‐Q data to improve stroke care. Methods: A cross‐sectional self‐administered online survey was administered (October 2021–February 2022). Participants were RES‐Q hospital local coordinators responsible for stroke data collection. Descriptive statistics are presented. Results: Surveys were sent to 1463 hospitals in 74 countries; responses were received from 358 hospitals in 55 countries (response rate 25%). RES‐Q data were used "always" or "often" to: develop quality improvement initiatives (n = 213, 60%); track stroke care quality over time (n = 207, 58%); improve local practice (n = 191, 53%); and benchmark against evidence‐based policies, procedures and/or guidelines to identify practice gaps (n = 179, 50%). Formal training in the use of RES‐Q tools and data were the most frequent support needs identified by respondents (n = 165, 46%). Over half "strongly agreed" or "agreed" that to support clinical practice change, education is needed on: (i) using data to identify evidence–practice gaps (n = 259, 72%) and change clinical practice (n = 263, 74%), and (ii) quality improvement science and methods (n = 255, 71%). Conclusion: RES‐Q data are used for monitoring stroke care performance. However, to facilitate their optimal use, effective quality improvement methods are needed. Educating staff in quality improvement science may develop competency and improve use of data in practice. [ABSTRACT FROM AUTHOR]

Background: Implementing patient-reported outcome measures (PROMs) to measure and evaluate health outcomes is increasing worldwide. Along with this emerging trend, it is important to identify which guidelines, frameworks, checklists, and recommendations exist, and if and how they have been used in implementing PROMs, especially in clinical quality registries (CQRs). Objective: This review aims to identify existing publications, as well as publications that discuss the application of actual guidelines, frameworks, checklists, and recommendations on PROMs' implementation for various purposes such as clinical trials, clinical practice, and CQRs. In addition, the identified publications will be used to guide the development of a new guideline for PROMs' implementation in CQRs, which is the aim of the broader project. Methods: A literature search of the databases MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials will be conducted since the inception of the databases, in addition to using Google Scholar and gray literature to identify literature for the scoping review. Predefined inclusion and exclusion criteria will be used for all phases of screening. Existing publications of guidelines, frameworks, checklists, recommendations, and publications discussing the application of those methodologies for implementing PROMs in clinical trials, clinical practice, and CQRs will be included in the final review. Data relating to bibliographic information, aim, the purpose of PROMs use (clinical trial, practice, or registries), name of guideline, framework, checklist and recommendations, the rationale for development, and their purpose and implications will be extracted. Additionally, for publications of actual methodologies, aspects or domains of PROMs' implementation will be extracted. A narrative synthesis of included publications will be conducted. Results: The electronic database searches were completed in March 2024. Title and abstract screening, full-text screening, and data extraction will be completed in May 2024. The review is expected to be completed by the end of August 2024. Conclusions: The findings of this scoping review will provide evidence on any existing methodologies and tools for PROMs' implementation in clinical trials, clinical practice, and CQRs. It is anticipated that the publications will help us guide the development of a new guideline for PROMs' implementation in CQRs. Trial Registration: PROSPERO CRD42022366085; https://tinyurl.com/bdesk98x International Registered Report Identifier (IRRID): DERR1-10.2196/52572 [ABSTRACT FROM AUTHOR]

In 2018, the Australian Dementia Network (ADNeT) was established to bring together Australia's leading dementia researchers, people with living experience and clinicians to transform research and clinical care in the field. To address dementia diagnosis, treatment, and care, ADNeT has established three core initiatives: the Clinical Quality Registry (CQR), Memory Clinics, and Screening for Trials. Collectively, the initiatives have developed an integrated clinical and research community, driving practice excellence in this field, leading to novel innovations in diagnostics, clinical care, professional development, quality and harmonization of healthcare, clinical trials, and translation of research into practice. Australia now has a national Registry for Mild Cognitive Impairment and dementia with 55 participating clinical sites, an extensive map of memory clinic services, national Memory and Cognition Clinic Guidelines and specialized screening for trials sites in five states. This paper provides an overview of ADNeT's achievements to date and future directions. With the increase in dementia cases expected over coming decades, and with recent advances in plasma biomarkers and amyloid lowering therapies, the nationally coordinated initiatives and partnerships ADNeT has established are critical for increased national prevention efforts, co-ordinated implementation of emerging treatments for Alzheimer's disease, innovation of early and accurate diagnosis, driving continuous improvements in clinical care and patient outcome and access to post-diagnostic support and clinical trials. For a heterogenous disorder such as dementia, which is now the second leading cause of death in Australia following cardiovascular disease, the case for adequate investment into research and development has grown even more compelling. [ABSTRACT FROM AUTHOR]

Introduction and hypothesis: Stress urinary incontinence (SUI) and pelvic organ prolapse (POP) are common pelvic floor disorders (PFDs). Owing to significant adverse events associated with mesh-related pelvic floor procedures (PFPs) in a proportion of the surgically treated population, and deficits in collection and reporting of these events, the Australian Government identified an urgent need for a tracking mechanism to improve safety and quality of care. The Australasian Pelvic Floor Procedure Registry (APFPR) was recently established following the 2018 Senate Committee Inquiry with the aim of tracking outcomes of PFP involving the use of devices and/or prostheses, with the objective of improving the health outcomes of women who undergo these procedures. This paper will describe the APFPR's aims, development, implementation and possible challenges on the way to its establishment. Methods: The APFPR has been developed and implemented in accordance with the national operating principles of clinical quality registries (CQRs). The minimum datasets (MDS) for the registry's database have been developed using a modified Delphi process, and data are primarily being collected from participating surgeons. Patient recruitment is based on an opt-out approach or a waiver of consent. Patient-reported outcome measures (PROMs) providing additional health and outcome information will be obtained from participating women to support safety monitoring of mesh-related adverse events. Results: Currently in the Australasian Pelvic Floor Procedure Registry (APFPR) there are 32 sites from various jurisdictions across Australia, that have obtained relevant ethics and governance approvals to start patient recruitment and data collection as of January 2023. Additionally, there are two sites that are awaiting governance review and five sites that are having documentation compiled for submission. Seventeen sites have commenced patient registration and have entered data into the database. Thus far, we have 308 patients registered in the APFPR database. The registry also published its first status report and a consumer-friendly public report in 2022. Conclusions: The registry will act as a systematic tracking mechanism by collecting outcomes on PFP, especially those involving devices and/or prostheses to improve safety and quality of care. [ABSTRACT FROM AUTHOR]

Abstract Background Lymphoma is a malignancy of lymphocytes and lymphoid tissues comprising a heterogeneous group of diseases, with up to 80 entities now described. Lymphoma is the 6th most common cancer in Australia, affecting patients of all ages, with rising incidence rates. With the proliferation of efficacious novel agents, therapeutic strategies are increasingly diverse and survival is improving. There is a clear need for contemporary robust and detailed data on diagnostic, investigational and management strategies for this disease in Australia, New Zealand and worldwide, to inform and benchmark local and international standards of care. Clinical quality registries can provide these data, and support development of strategies to address variations in management, including serving as platforms for clinical trials and other research activities. The Lymphoma and Related Diseases Registry (LaRDR) was developed to capture details of patient demographics, disease characteristics, and management throughout their disease course and therapy and to develop outcome benchmarks nationally and internationally for lymphoma. This report describes the aims, development and implementation of the LaRDR, as well as challenges addressed in the process. Methods The LaRDR was established in 2016 as a multicentre, collaborative project at sites across Australia with a secure online database which collects prospective data on patients with a new diagnosis of lymphoma or chronic lymphocytic leukaemia (CLL). LaRDR development required multidisciplinary participation including specialist haematology, information technology, and biostatistical support, as well as secure funding. Here we describe the database development, data entry, ethics approval process, registry governance and support for participating sites and the coordinating centre. Results To date more than 5,300 patients have been enrolled from 28 sites in Australia and New Zealand. Multiple challenges arose during the development, which we describe, along with approaches used to overcome them. Several confirmed international collaborations are now in place, and the registry is providing valuable data for clinicians, researchers, industry and government, including through presentations of results at major national and international conferences. Conclusion Challenges in establishing the LaRDR have been successfully overcome and the registry is now a valuable resource for lymphoma clinicians, researchers, health economists and others in Australia, New Zealand and globally.

Introduction Newborn babies who require admission for specialist care can experience immediate and sometimes lasting impacts. For babies admitted to special care nurseries (SCN), there is no dataset comparable to that of the Australian and New Zealand Neonatal Network (ANZNN), which has helped improve the quality and consistency of neonatal intensive care through standardised data collection. Objectives We aim to establish a proof-of-concept, Victoria-wide registry of babies admitted to SCN, embedded within the whole-of-Victoria Generation Victoria (GenV) cohort. Methods This prototype registry is a depth sub-cohort nested within GenV, targeting all babies born in Victoria from Oct-2021 to Oct-2023. Infants admitted to SCN are eligible. The minimum dataset will be harmonised with ANZNN for common constructs but also include SCN-only items, and will cover maternal, antenatal, newborn, respiratory/respiratory support, cardiac, infection, nutrition, feeding, cerebral and other items. As well as the dataset, this protocol outlines the anticipated cohort, timeline for this registry, and how this will serve as a resource for longitudinal research through its integration with the GenV longitudinal cohort and linked datasets. Conclusion The registry will provide the opportunity to better understand the health and future outcomes of the large and growing cohort of children that require specialist care after birth. The data would generate translatable evidence and could lay the groundwork for a stand-alone ongoing clinical quality registry post-GenV.

Clinical quality registry, real-world, registry, severe asthma Asthma registries: Tedious paperwork or a versatile tool for the generation of knowledge - Insights from the Australasian Severe Asthma Registry (ASAR) Disease-specific clinical registries are a tool for the systematic collection of health-related information and evaluation of outcomes for a specific group of individuals, and for a specified scientific, clinical or policy purpose.[1] To be meaningful, registry data should better characterize a relevant patient population, and provide a platform for analyses that will inform clinical practice and improve patient outcomes. Keywords: clinical quality registry; real-world; registry; severe asthma EN clinical quality registry real-world registry severe asthma 986 988 3 10/20/23 20231101 NES 231101 Summary The Australasian Severe Asthma Registry (ASAR) is a multicentre Clinical Quality Registry enrolling patients in Australia and New Zealand. [Extracted from the article]

Abstract Background Clinical quality registries (CQRs) can likely improve quality in healthcare and research. However, studies indicate that effective use of CQRs is hindered by lack of engagement and interest among stakeholders, as well as factors related to organisational context, registry design and data quality. To fulfil the potential of CQRs, more knowledge on stakeholders’ perceptions of the factors that will facilitate or hamper the development of CQRs is essential to the more appropriate targeting of registry implementation and the subsequent use of the data. The primary aim of this study was to examine factors that can potentially affect the development of a national CQR for interventional radiology in Norway from the perspective of stakeholders. Furthermore, we wanted to identify the intervention functions likely to enable CQR development. Only one such registry, located in Sweden, has been established. To provide a broader context for the Norwegian study, we also sought to investigate experiences with the development of this registry. Methods A qualitative study of ten Norwegian radiologists and radiographers using focus groups was conducted, and an in-depth interview with the initiator of the Swedish registry was carried out. Questions were based on the Capability, Opportunity and Motivation for Behaviour Model and the Theoretical Domains Framework. The participants’ responses were categorised into predefined themes using a deductive process of thematic analysis. Results Knowledge of the rationale used in establishing a CQR, beliefs about the beneficial consequences of a registry for quality improvement and research and an opportunity to learn from a well-developed registry were perceived by the participants as factors facilitating CQR development. The study further identified a range of development barriers related to environmental and resource factors (e.g., a lack of organisational support, time) and individuallevel factors (e.g., role boundaries, resistance to change), as well as several intervention functions likely to be appropriate in targeting these barriers. Conclusion This study provides a deeper understanding of factors that may be involved in the behaviour of stakeholders regarding the development of a CQR. The findings may assist in designing, implementing and evaluating a methodologically rigorous CQR intervention.

Background: Pregnancy represents a time of increased morbidity and mortality for women and their infants. Clinical quality registries (CQRs) collect, analyse and report key healthcare quality indicators for patient cohorts to improve patient care. There are limited data regarding existing CQRs in pregnancy. This scoping review aimed to: (1) identify Australian CQRs specific to pregnancy care and describe their general characteristics; and (2) outline their aims and measured outcomes Methods: The scoping review was undertaken according to Joanna Briggs Institute guidelines. CQRs were identified using a systematic approach from publications (Ovid MEDLINE, PubMed, Google Scholar), peer consultation, the Australian register of clinical registries and web searches. Details surrounding general characteristics, aims and outcomes were collated. Results: We identified two primary sources of information about pregnancy care. (1) Six CQRs are specific to pregnancy (Australia and New Zealand twin‐twin transfusion syndrome registry, Australian Pregnancy Register for women with epilepsy and those taking anti‐epileptic drugs, National Register of Antipsychotic Medication in Pregnancy, Australasian Maternity Outcomes Surveillance System, Neonatal Alloimmune Thrombocytopaenia Registry and the Diabetes in Pregnancy clinical register). (2) Fourteen observational cohort studies were facilitated by non‐pregnancy‐specific CQRs where a subsection of patients underwent pregnancy. Conclusions: Australian CQRs currently report varied information regarding some selected conditions during pregnancy and offer therapeutic and epidemiological insight into their care. Further research into their effectiveness is warranted. We note the lack of a CQR spanning the common problems of pregnancy in general, where significant health, service and economic gains are possible. [ABSTRACT FROM AUTHOR]

Objectives To: (1) outline the research produced using linked data from the Registry of Senior Australians (ROSA) which informed the recommendations from Australia’s Royal Commission into Aged Care Quality and Safety (delivered February 2021); (2) describe the Australian Government Aged Care Roadmap Reforms (announced May 2021) resulting from the recommendations. Approach ROSA was established in 2017 and is led by a partnership of scientists, clinicians, aged care providers and consumer advocates from nine organisations seeking to improve the lives of Australians in aged care. ROSA is a Clinical Quality Registry comprised of linked national and cross-jurisdictional aged and health care data and includes a national historical de-identified cohort (3.5 million individuals, 2002-2020) and a prospectively enrolled cohort in the state of South Australia (26,600 individuals, 2018-current). This is a summary of ROSA’s high-quality evidence used by the Royal Commission and translation of this evidence into policy by leveraging existing data infrastructure. Results Between 2019-2020 the ROSA team led the delivery of four in-depth reports for the Royal Commission, contributed data and expertise to an additional four published Commission reports. Examples of ROSA outputs informing the Commissions’ recommendations included: evidence of national increased psychotropic medication use following entry to residential aged care, evidence of higher risk of mortality and entry to permanent care while waiting for home care packages, development of quality indicators to monitor quality and safety of care nationally, and to facilitate international comparisons and benchmarking. Examples of recommendations included in the Australian Government Aged Care Roadmap: release of substantial funding to increase the availability of home care packages, public reporting system for quality and safety monitoring and several changes to medication management. Conclusion Registries are key resources for high quality real-world evidence generation needed to inform national investigations, ultimately leading to significant sector reform. The ROSA experience highlights that cross-sectoral data linkages, together with technical expertise, informed by clinicians and consumers, are invaluable resources for system reform and policy generation.

Objectives: The field of early psychosis has undergone considerable expansion over the last few decades and has a strong evidence base of effectiveness. Like all areas of healthcare, however, early psychosis services need to more consistently deliver higher quality care to achieve better outcomes for patients and families. A national clinical research infrastructure is urgently required to enable the sector to deliver the highest quality care and expand and translate evidence more quickly and efficiently. This paper describes the establishment of the Australian Early Psychosis Collaborative Consortium (AEPCC) that aims to achieve this. Conclusion: AEPCC is the first of its kind in Australia (and internationally). It will deliver the required clinical research infrastructure through the implementation of a clinical quality registry, clinical trials and translation network, and lived experience network. AEPCC will provide a critical resource to better understand the state of early psychosis care, and trial new interventions on a scale that has not previously been possible in Australia. [ABSTRACT FROM AUTHOR]

This study used the prospective National Surgical Quality Improvement Program (NSQIP) Transplant pilot database to analyze surgical complications after liver transplantation (LT) in LT recipients from 2017to 2019. The primary outcome was surgical complication requiring intervention (Clavien‐Dindo grade II or greater) within 90 days of transplant. Of the 1684 deceased donor and 109 living donor LT cases included from 29 centers, 38% of deceased donor liver recipients and 47% of living donor liver recipients experienced a complication. The most common complications included biliary complications (19% DDLT; 31% LDLT), hemorrhage requiring reoperation (14% DDLT; 9% LDLT), and vascular complications (6% DDLT; 9% LDLT). Management of biliary leaks (35.3% ERCP, 38.0% percutaneous drainage, 26.3% reoperation) and vascular complications (36.2% angioplasty/stenting, 31.2% medication, 29.8% reoperation) was variable. Biliary (aHR 5.14, 95% CI 2.69–9.8, P <.001), hemorrhage (aHR 2.54, 95% CI 1.13–5.7, P =.024) and vascular (aHR 2.88, 95% CI.85–9.7, P =.089) complication status at 30‐days post‐transplant were associated with lower 1‐year patient survival. We conclude that biliary, hemorrhagic and vascular complications continue to be significant sources of morbidity and mortality for LT recipients. Understanding the different risk factors for complications between deceased and living donor liver recipients and standardizing complication management represent avenues for continued improvement. [ABSTRACT FROM AUTHOR]

Background The goal of a clinical quality registry is to deliver immediate gains in survival and quality of life by delivering timely feedback to practitioners, thereby ensuring every patient receives the best existing treatment. We are developing an Australian Brain Cancer Registry (ABCR) to identify, describe, and measure the impact of the variation and gaps in brain cancer care from the time of diagnosis to the end of life. Methods To determine a set of clinical quality indicators (CQIs) for the ABCR, a database and internet search were used to identify relevant guidelines, which were then assessed for quality using the AGREE II Global Rating Scale. Potential indicators were extracted from 21 clinical guidelines, ranked using a modified Delphi process completed in 2 rounds by a panel of experts and other stakeholders, and refined by a multidisciplinary Working Group. Results Nineteen key quality reporting domains were chosen, specified by 57 CQIs detailing the specific inclusion and outcome characteristics to be reported. Conclusion The selected CQIs will form the basis for the ABCR, provide a framework for achievable data collection, and specify best practices for patients and health care providers, with a view to improving care for brain cancer patients. To our knowledge, the systematic and comprehensive approach we have taken is a world first in selecting the reporting specifications for a brain cancer clinical registry. [ABSTRACT FROM AUTHOR]

Background: Clinical quality registries (CQRs) can likely improve quality in healthcare and research. However, studies indicate that effective use of CQRs is hindered by lack of engagement and interest among stakeholders, as well as factors related to organisational context, registry design and data quality. To fulfil the potential of CQRs, more knowledge on stakeholders' perceptions of the factors that will facilitate or hamper the development of CQRs is essential to the more appropriate targeting of registry implementation and the subsequent use of the data. The primary aim of this study was to examine factors that can potentially affect the development of a national CQR for interventional radiology in Norway from the perspective of stakeholders. Furthermore, we wanted to identify the intervention functions likely to enable CQR development. Only one such registry, located in Sweden, has been established. To provide a broader context for the Norwegian study, we also sought to investigate experiences with the development of this registry. Methods: A qualitative study of ten Norwegian radiologists and radiographers using focus groups was conducted, and an in-depth interview with the initiator of the Swedish registry was carried out. Questions were based on the Capability, Opportunity and Motivation for Behaviour Model and the Theoretical Domains Framework. The participants' responses were categorised into predefined themes using a deductive process of thematic analysis. Results: Knowledge of the rationale used in establishing a CQR, beliefs about the beneficial consequences of a registry for quality improvement and research and an opportunity to learn from a well-developed registry were perceived by the participants as factors facilitating CQR development. The study further identified a range of development barriers related to environmental and resource factors (e.g., a lack of organisational support, time) and individuallevel factors (e.g., role boundaries, resistance to change), as well as several intervention functions likely to be appropriate in targeting these barriers. Conclusion: This study provides a deeper understanding of factors that may be involved in the behaviour of stakeholders regarding the development of a CQR. The findings may assist in designing, implementing and evaluating a methodologically rigorous CQR intervention. [ABSTRACT FROM AUTHOR]

Background Clinical registry participation is a measure of healthcare quality. Limited knowledge exists on Australian hospitals' participation in clinical registries and whether this registry data informs quality improvement initiatives. Objective To identify participation in clinical registries, determine if registry data inform quality improvement initiatives, and identify registry participation enablers and clinicians' educational needs to improve use of registry data to drive practice change. Methods A self-administered survey was distributed to staff coordinating registries in seven hospitals in New South Wales, Australia. Eligible registries were international-, national- and state-based clinical, condition-/disease-specific and device/product registries. Results Response rate was 70% (97/139). Sixty-two (64%) respondents contributed data to 46 eligible registries. Registry reports were most often received by nurses (61%) and infrequently by hospital executives (8.4%). Less than half used registry data 'always' or 'often' to influence practice improvement (48%) and care pathways (49%). Protected time for data collection (87%) and benchmarking (79%) were 'very likely' or 'likely' to promote continued participation. Over half 'strongly agreed' or 'agreed' that clinical practice improvement training (79%) and evidence–practice gap identification (77%) would optimize use of registry data. Conclusions Registry data are generally only visible to local speciality units and not routinely used to inform quality improvement. Centralized on-going registry funding, accessible and transparent integrated information systems combined with data informed improvement science education could be first steps to promote quality data-driven clinical improvement initiatives. [ABSTRACT FROM AUTHOR]

Introduction and hypothesis: The objective was to overview the literature on the existing pelvic floor procedure registries and databases and to identify patient demographic, clinical and/or patient-reported data items for inclusion in the Australasian Pelvic Floor Procedure Registry (APFPR) Minimum Data Set (MDS). Methods: We conducted a literature search on the MEDLINE, Embase, CINAHL and PsycINFO databases in addition to Google Scholar and grey literature to identify studies in the period January 2008 to January 2020. All were English studies of registries and databases on female adults undergoing surgery for pelvic floor disorders including stress urinary incontinence (SUI) and pelvic organ prolapse (POP). Studies were assessed on demographic and clinical patient characteristics, procedure or treatment type, health-related quality of life, adverse events and safety outcomes, captured by pelvic floor procedure registries or databases that have been established to date. Results: From 1662 studies, 29 publications describing 22 different pelvic floor registries and databases were included for analysis, 12 (55%) of which were multicentre. Six (27%) registries and databases involved solely SUI, eight (36%) were regarding POP, and the remaining eight (36%) focussed on both conditions. The majority of registries and databases captured similar details on patient characteristics, comorbidities and other clinical features, procedure or treatment type, health-related quality of life, adverse events, safety and efficacy. Conclusion: The findings of this scoping review will assist in determining the MDS for the APFPR, an initiative of the Australian government, to improve health and quality of life outcomes of women who undergo pelvic floor reconstructive procedures. [ABSTRACT FROM AUTHOR]

Abstract Background Clinical quality registries and other systems that conduct routine post-discharge surveillance of patient outcomes following surgery may have difficulty surveying patients who have limited proficiency in the language of the healthcare provider. Interpreter proxies (family and carers) are often used due to limited access to certified healthcare interpreters (due to cost or availability). The aim of this study was to assess the reliability of engaging interpreter proxies compared with certified healthcare interpreters for the administration of patient-reported health-related surveys for people with limited English proficiency (LEP). Methods People with LEP and due for a routine 6-month telephone follow-up post knee or hip arthroplasty were invited to participate. Participants were randomly allocated to having their first interview with an interpreter proxy or a certified healthcare interpreter followed by the second (crossover) interview within 2 weeks (range: 4 to 12 days) after the first interview using the alternative method. Agreement between the two methods was assessed using quadratic weighted Cohen’s kappa, intraclass correlation and concordance correlation co-efficient where appropriate for EQ-5D health domains, total Oxford hip and knee scores, patient satisfaction, operation success, readmission, reoperation, and post-surgical complication responses. The mean of the differences between the same data items collected by each of the two methods was also calculated. Results Eighty five participants (96%) completed the study. There was substantial to excellent inter-rater agreement (kappa = 0.69–0.87 and ICCs above 0.74) for all but one measure. The mean differences between family proxy and healthcare interpreter scores for each participant were small, ranging from 0.01 (score range of 1–5) to 0.72 (score range of 0–100). Conclusion These results suggest that using interpreter proxies is a reliable alternative to certified healthcare interpreters in conducting patient-reported health surveys, potentially making this process easier and cost effective for researchers and registries.

Abstract Aim The aim of this study was to evaluate the reliability and accuracy of documentation in FinnHEMS database, which is a nationwide helicopter emergency service (HEMS) clinical quality registry. Methods This is a nationwide study based on written fictional clinical scenarios. Study subjects were HEMS physicians and paramedics, who filled in the clinical quality registry based on the clinical scenarios. The inter-rater -reliability of the collected data was analyzed with percent agreement and free-marginal multi-rater kappa. Results Dispatch coding had a percent agreement of 91% and free-marginal multi-rater kappa value of 0.83. Coding for transportation or mission cancellation resulted in an agreement of 84% and free-marginal kappa value of 0.68. An agreement of 82% and a kappa value of 0.73 for dispatcher coding was found. Mission end, arrival at hospital and HEMS unit dispatch -times had agreements from 80 to 85% and kappa values from 0.61 to 0.73. The emergency call to dispatch centre time had an agreement of 71% and kappa value of 0.56. The documentation of pain had an agreement of 73% on both the first and second measurements. All other vital parameters had less than 70% agreement and 0.40 kappa value in the first measurement. The documentation of secondary vital parameter measurements resulted in agreements from 72 to 91% and kappa values from 0.43 to 0.64. Conclusion Data from HEMS operations can be gathered reliably in a national clinical quality registry. This study revealed some inaccuracies in data registration and data quality, which are important to detect to improve the overall reliability and validity of the HEMS clinical quality register.

Abstract Background The use of clinical quality registries as means for data driven improvement in healthcare seem promising. However, their use has been shown to be challenged by a number of aspects, and we suggest some may be related to poor implementation. There is a paucity of literature regarding barriers and facilitators for registry implementation, in particular aspects related to data collection and entry. We aimed to illuminate this by exploring how staff perceive the implementation process related to the registries within the field of cardiac rehabilitation in England and Denmark. Methods A qualitative, interview-based study with staff involved in collecting and/or entering data into the two case registries (England N = 12, Denmark N = 12). Interviews were analysed using content analysis. The Consolidated Framework for Implementation Research was used to guide interviews and the interpretation of results. Results The analysis identified both similarities and differences within and between the studied registries, and resulted in clarification of staffs´ experiences in an overarching theme: ´Struggling with practices´ and five categories; the data entry process, registry quality, resources and management support, quality improvement and the wider healthcare context. Overall, implementation received little focused attention. There was a lack of active support from management, and staff may experience a struggle of fitting use of a registry into a busy and complex everyday practice. Conclusion The study highlights factors that may be important to consider when planning and implementing a new clinical quality registry within the field of cardiac rehabilitation, and is possibly transferrable to other fields. The results may thus be useful for policy makers, administrators and managers within the field and beyond. Targeting barriers and utilizing knowledge of facilitating factors is vital in order to improve the process of registry implementation, hence helping to achieve the intended improvement of care processes and outcomes.

Background: In 2009, the Burns Registry of Australia and New Zealand (BRANZ) published a set of clinical quality indicators (QIs) to monitor performance, improve quality of care, and inform and change policy. With several years of data collected since the initial development of the indicators for burns, the BRANZ QI Working Party reviewed the clinical QIs for relevance and meaning, and considered new QIs that had not been collected previously.Method: Using published literature and expert opinion, the QI Working Party, consisting of multidisciplinary burn clinicians, reviewed the QIs for burn care to be included as routine data items in the BRANZ.Results: In July 2016, the list of clinical QIs in the BRANZ was updated to 23 QIs/data items, covering structure, process, and outcome measures. Four QIs were removed as they were not found to be useful, nine QIs/data items were revised, and eight new QIs/data items were added as they were considered to be clinically useful.Conclusion: This review outlines the changes made to the QIs collected by the BRANZ four years since their development and implementation. Ongoing refinement of the BRANZ QIs will ensure that high quality data is collected to drive improvements in clinical and patient outcomes. [ABSTRACT FROM AUTHOR]

Adherence to evidence-based management is variable in inflammatory bowel disease (IBD), which leads to worse patient outcomes and higher healthcare utilization. Solutions include electronic systems to enhance care, but these have often been limited by lack of clinician design input, poor usability, and low perceived value. A cloud-based IBD-specific clinical management software – 'Crohn's Colitis Care' (CCCare) was developed by Australia and New Zealand Inflammatory Bowel Disease Consortium clinicians and software developers to improve this. CCCare captures patient-reported disease activity and medical assessment, medication monitoring, cancer screening, preventative health, and facilitates communication with the IBD team and referring doctor. De-identified longitudinal data are stored separately in a clinical quality registry for research. CCCare was tested for feasibility and usability in routine clinical settings at two large Australian hospitals. Users' experience was evaluated with System Usability Scale (SUS). Value to clinicians and patients was assessed by qualitative feedback. Security was assessed by penetration testing. Users (n = 13; doctors, nurses, patients) reported good usability and learnability (mean SUS score 75 (range 50–95), sub-scores were 77 (50–94) and 68 (38–100), respectively). Patients reported better communication with clinical team and greater ability to track disease. Clinicians highlighted structured management plans, medication adherence, and centralised data repository as positive features. Penetration testing was passed successfully. Initial evaluation demonstrates CCCare is usable, secure, and valued in clinical use. It is designed to measure outcomes of clinical care, including efficacy, quality, cost, and complications for individuals, and to audit these at hospital and national level. [ABSTRACT FROM AUTHOR]

Background: A clinical quality registry (CQR) for dementia provides benefits to those living with dementia and their carers by improving the quality and experience of care through benchmarking and monitoring patient outcomes. CQRs use data collected to form clinical quality indicators (CQIs) through which variations in clinical processes and outcomes between different services and jurisdictions can be highlighted.Objective: This modified Delphi study aimed to develop CQIs for a pilot Australian CQR for dementia and mild cognitive impairment. These CQIs are based on evidence, patient and caregiver experience, and clinician perspectives across the trajectory of care from diagnosis to end-of-life.Methods: An initial list of indicators from existing dementia registries, academic literature, and clinical practice guidelines was synthesized. A working group of clinicians and registry experts further refined these indicators. A panel of experts comprised of a consumer, a carer, clinicians, consumer organization representatives, and academics. The experts participated in three phases of the modified Delphi study: 1) online survey for scoring importance and validity, 2) a one-day face-to-face discussion, and 3) final survey round to assess importance, validity, and feasibility.Results: The panel assessed 33 CQIs and confirmed a final set of 18 indicators. The CQIs mapped to the domains of quality of diagnosis, quality of management, access to services and supports, and potentially preventable complications. These CQIs will be tested initially in memory clinics and inform the data collection processes for the Australia Dementia Network Registry (ADNet).Conclusion: A dementia CQR is fundamental to ongoing monitoring and development of good quality and consistent care across Australia. [ABSTRACT FROM AUTHOR]

Background: Several scores and codes are used in prehospital clinical quality registries but little is known of their reliability. The aim of this study is to evaluate the inter-rater reliability of the American Society of Anesthesiologists physical status (ASA-PS) classification system, HEMS benefit score (HBS), International Classification of Primary Care, second edition (ICPC-2) and Eastern Cooperative Oncology Group (ECOG) performance status in a helicopter emergency medical service (HEMS) clinical quality registry (CQR).Methods: All physicians and paramedics working in HEMS in Finland and responsible for patient registration were asked to participate in this study. The participants entered data of six written fictional missions in the national CQR. The inter-rater reliability of the ASA-PS, HBS, ICPC-2 and ECOG were evaluated using an overall agreement and free-marginal multi-rater kappa (Κfree).Results: All 59 Finnish HEMS physicians and paramedics were invited to participate in this study, of which 43 responded and 16 did not answer. One participant was excluded due to unfinished data entering. ASA-PS had an overall agreement of 40.2% and Κfree of 0.28 in this study. HBS had an overall agreement of 44.7% and Κfree of 0.39. ICPC-2 coding had an overall agreement of 51.5% and Κfree of 0.47. ECOG had an overall agreement of 49.6% and Κfree of 0.40.Conclusion: This study suggests a marked inter-rater unreliability in prehospital patient scoring and coding even in a relatively uniform group of practitioners working in a highly focused environment. This indicates that the scores and codes should be specifically designed or adapted for prehospital use, and the users should be provided with clear and thorough instructions on how to use them. [ABSTRACT FROM AUTHOR]

Keywords: Clinical Quality Registry; healthcare services; lung cancer EN Clinical Quality Registry healthcare services lung cancer 1103 1105 3 11/19/21 20211201 NES 211201 Unwarranted variation in lung cancer management and outcomes reflects important clinical quality and equity issues. A centralized lung cancer CQR should be capable of linkage with health service utilization data and electronic medical records, with data capture from the time of diagnosis. [Extracted from the article]

GLO:F02/02oct21:bju15366-fig-0001.jpg PHOTO (COLOR): 1 Primary treatment by NCCN category 2015-2017. gl Patient-reported outcomes are collected by PCOR-ANZ 12 months after the first recorded prostate cancer treatment using the Expanded Prostate cancer Index Composite-26 (EPIC-26) instrument [3]. Keywords: prostate cancer; clinical quality registry; outcomes; patient-reported outcomes measures; #PCSM; #ProstateCancer; #uroonc EN prostate cancer clinical quality registry outcomes patient-reported outcomes measures #PCSM #ProstateCancer #uroonc 6 8 3 10/12/21 20211002 NES 211002 Abbreviations NCCN National Comprehensive Cancer Network PCOR-ANZ Prostate Cancer Outcomes Registry of Australia and New Zealand The Prostate Cancer Outcomes Registry of Australia and New Zealand (PCOR-ANZ) has now been in operation for 6 years and has recently published a report providing details of activity for the period 2015-2017. Patterns of care for prostate cancer treatment and improving outcomes - are national registries the answer?. [Extracted from the article]

Background: Clinical quality registries and other systems that conduct routine post-discharge surveillance of patient outcomes following surgery may have difficulty surveying patients who have limited proficiency in the language of the healthcare provider. Interpreter proxies (family and carers) are often used due to limited access to certified healthcare interpreters (due to cost or availability). The aim of this study was to assess the reliability of engaging interpreter proxies compared with certified healthcare interpreters for the administration of patient-reported health-related surveys for people with limited English proficiency (LEP).Methods: People with LEP and due for a routine 6-month telephone follow-up post knee or hip arthroplasty were invited to participate. Participants were randomly allocated to having their first interview with an interpreter proxy or a certified healthcare interpreter followed by the second (crossover) interview within 2 weeks (range: 4 to 12 days) after the first interview using the alternative method. Agreement between the two methods was assessed using quadratic weighted Cohen's kappa, intraclass correlation and concordance correlation co-efficient where appropriate for EQ-5D health domains, total Oxford hip and knee scores, patient satisfaction, operation success, readmission, reoperation, and post-surgical complication responses. The mean of the differences between the same data items collected by each of the two methods was also calculated.Results: Eighty five participants (96%) completed the study. There was substantial to excellent inter-rater agreement (kappa = 0.69-0.87 and ICCs above 0.74) for all but one measure. The mean differences between family proxy and healthcare interpreter scores for each participant were small, ranging from 0.01 (score range of 1-5) to 0.72 (score range of 0-100).Conclusion: These results suggest that using interpreter proxies is a reliable alternative to certified healthcare interpreters in conducting patient-reported health surveys, potentially making this process easier and cost effective for researchers and registries. [ABSTRACT FROM AUTHOR]

Over two decades, the Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) cardiac surgery database program has evolved from a single state-based database to a national clinical quality registry program and is now the most comprehensive cardiac surgical registry in Australia. We report the current structure and governance of the program and its key activities. [ABSTRACT FROM AUTHOR]

Ann-Dorthe Zwisler,1 Henriette Knold Rossau,1 Anne Nakano,2,3 Sussie Foghmar,4 Regina Eichhorst,5 Eva Prescott,6 Charlotte Cerqueira,7 Anne Merete Boas Soja,4 Gunnar H Gislason,8–10 Mogens Lytken Larsen,5 Ulla Overgaard Andersen,11 Ida Gustafsson,4 Kristian K Thomsen,12 Lene Boye Hansen,13 Signe Hammer,14 Lone Viggers,15 Bo Christensen,16 Birgitte Kvist,17 Cecilie Lindström Egholm,18 Ole May19 On behalf of the Working Group of Preventive Cardiology and Rehabilitation, Danish Society of Cardiology, and the Working Group of Cardiac Clinical Registries, Danish Society of Cardiology 1Danish Centre for Rehabilitation and Palliative Care, Odense University Hospital and University of Southern Denmark, Odense, 2Department of Clinical Epidemiology, Aarhus University Hospital, 3Registry Support Centre (West) – Clinical Quality Improvement & Health Informatics, Aarhus, 4Department of Cardiology, Copenhagen University Hospital, Hvidovre, 5Department of Cardiology, Aalborg University Hospital, Aalborg, 6Department of Cardiology, Bispebjerg Hospital, University of Copenhagen, Copenhagen, 7Registry Support Centre (East) – Epidemiology and Biostatistics, Research Centre for Prevention and Health, the Capital Region of Denmark, Glostrup, 8Department of Cardiology, Copenhagen University Hospital Gentofte, Hellerup, 9The Danish Heart Foundation, Copenhagen, 10The National Institute of Public Health, University of Southern Denmark, 11Department of Cardiology, Holbaek Hospital, University of Copenhagen, Copenhagen, 12Department of Cardiology, Hospital of Southwest Jutland, Esbjerg, 13Department of Cardiology, Gentofte Hospital, Gentofte, 14Department of Occupational Therapy and Physiotherapy, Herlev Hospital, Herlev, 15Department of Nutrition, Regional Hospital West Jutland, Holstebro, 16Department of General Medicine, School of Public Health, Aarhus University, Aarhus, 17Department of Health Care and Prevention, Municipality of Frederikshavn, Frederikshavn, 18The Regional Research Unit, Region Zealand, Roskilde, 19Department of Medicine, Cardiovascular Research Unit, Regional Hospital Herning, Herning, Denmark Aim of database: The Danish Cardiac Rehabilitation Database (DHRD) aims to improve the quality of cardiac rehabilitation (CR) to the benefit of patients with coronary heart disease (CHD).Study population: Hospitalized patients with CHD with stenosis on coronary angiography treated with percutaneous coronary intervention, coronary artery bypass grafting, or medication alone. Reporting is mandatory for all hospitals in Denmark delivering CR. The database was initially implemented in 2013 and was fully running from August 14, 2015, thus comprising data at a patient level from the latter date onward.Main variables: Patient-level data are registered by clinicians at the time of entry to CR directly into an online system with simultaneous linkage to other central patient registers. Follow-up data are entered after 6 months. The main variables collected are related to key outcome and performance indicators of CR: referral and adherence, lifestyle, patient-related outcome measures, risk factor control, and medication. Program-level online data are collected every third year.Descriptive data: Based on administrative data, approximately 14,000 patients with CHD are hospitalized at 35 hospitals annually, with 75% receiving one or more outpatient rehabilitation services by 2015. The database has not yet been running for a full year, which explains the use of approximations.Conclusion: The DHRD is an online, national quality improvement database on CR, aimed at patients with CHD. Mandatory registration of data at both patient level as well as program level is done on the database. DHRD aims to systematically monitor the quality of CR over time, in order to improve the quality of CR throughout Denmark to benefit patients. Keywords: secondary prevention, coronary heart disease, cardiovascular prevention, clinical quality registry, clinical database, quality improvement

Background: The use of clinical quality registries as means for data driven improvement in healthcare seem promising. However, their use has been shown to be challenged by a number of aspects, and we suggest some may be related to poor implementation. There is a paucity of literature regarding barriers and facilitators for registry implementation, in particular aspects related to data collection and entry. We aimed to illuminate this by exploring how staff perceive the implementation process related to the registries within the field of cardiac rehabilitation in England and Denmark.Methods: A qualitative, interview-based study with staff involved in collecting and/or entering data into the two case registries (England N = 12, Denmark N = 12). Interviews were analysed using content analysis. The Consolidated Framework for Implementation Research was used to guide interviews and the interpretation of results.Results: The analysis identified both similarities and differences within and between the studied registries, and resulted in clarification of staffs´ experiences in an overarching theme: ´Struggling with practices´ and five categories; the data entry process, registry quality, resources and management support, quality improvement and the wider healthcare context. Overall, implementation received little focused attention. There was a lack of active support from management, and staff may experience a struggle of fitting use of a registry into a busy and complex everyday practice.Conclusion: The study highlights factors that may be important to consider when planning and implementing a new clinical quality registry within the field of cardiac rehabilitation, and is possibly transferrable to other fields. The results may thus be useful for policy makers, administrators and managers within the field and beyond. Targeting barriers and utilizing knowledge of facilitating factors is vital in order to improve the process of registry implementation, hence helping to achieve the intended improvement of care processes and outcomes. [ABSTRACT FROM AUTHOR]

Background: Prior to 2004, Australia and New Zealand lacked a systematic method to measure burn incidence, aetiology and quality of care or outcomes for burn patients. The Australian and New Zealand Burn Association (ANZBA) commenced the Bi-National Burns Registry (Bi-NBR) at that time. As a result of the limitations identified with the registry, ANZBA collaborated with Monash University to develop the registry as a clinical quality registry . Method: A Steering Committee was formed to oversee the conduct and development of the registry. A Reference Committee revised the minimum dataset and working parties developed clinical quality indicators, and an outcome pilot project. Results: Institutional ethics approval has been obtained for 16 out of 17 sites and a formalised governance process developed. The minimum dataset was improved and includes clinical quality indicators. The Bi-NBR clinical quality registry was launched on July 1st 2009. A long-term outcome pilot project has been developed with five burn units participating (recruitment commenced October 2009). Conclusion: Through a rigorous development process, a clinical quality registry for burns has been established which allows benchmarking of processes and outcomes between units. The intention is that all burns units across Australia and New Zealand will contribute to the registry. [Copyright &y& Elsevier]