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IntroductionComorbidities are significant patient factors that contribute to outcomes after surgery. There is highly variable collection of this information across the literature. To help guide the systematic collection of best practice data, the Australian Spine Registry conducted an evidence map to investigate (i) what comorbidities are collected by spine registries, (ii) how they are collected and (iii) the compliance and completeness in collecting comorbidity data.MethodA literature search was performed to identify published studies of adult spine registry data reporting comorbidities. In addition, targeted questionnaires were sent to existing global spine registries to identify the maximum number of relevant results to build the evidence map.ResultsThirty-six full-text studies met the inclusion criteria. There was substantial variation in the reporting of comorbidity data; 55% of studies reported comorbidity collection, but only 25% reported the data collection method and 20% reported use of a comorbidity index. The variation in the literature was confirmed with responses from 50% of the invited registries (7/14). Of seven, three use a recognised comorbidity index and the extent and methods of comorbidity collection varied by registry.ConclusionThis evidence map identified variations in the methodology, data points and reporting of comorbidity collection in studies using spine registry data, with no consistent approach. A standardised set of comorbidities and data collection methods would encourage collaboration and data comparisons between patient cohorts and could facilitate improved patient outcomes following spine surgery by allowing data comparisons and predictive modelling of risk factors.

This study aims to forecast overall and aggressive prostate cancer counts at the local government area (LGA) level over 10 years (2019-2028) in Victoria, Australia, using Victorian Cancer Registry (2001-2018) data.We used the Age-Period-Cohort approach to estimate the annual age-specific incidence in each LGA and used Bayesian spatiotemporal models that account for non-linear temporal trends and area-level risk factors. We evaluated the models' performance by withholding and comparing forecasts with the 2014-2018 data.There were 80,449 prostate cancer cases between 2001 and 2018, with an overall increasing trend. Compared to 2001, prostate cancer incidence increased by 69%, from 3049 to 5167 cases in 2018. Prostate cancer counts are expected to reach 7631 cases in 2028, a further 48% increase. Unexplained area-level spatial variation was substantially reduced after adjusting for the area-level elderly population. Aggressive prostate cancer cases increased by 107% between 2001 and 2018 and are expected to rise by 123% increase in 2028. The proportion of aggressive prostate cancer cases will increase to 31% in 2028 from 20% in 2018. By 2028, overall and aggressive prostate cancer cases are projected to be increasing in 66% and 61% of LGAs.Prostate cancer cases are projected to rise at the state level and most LGAs in the next 10 years, with much steeper increases in aggressive cases. Population growth and an ageing population have primarily contributed to this rise besides prostate-specific antigen testing. These prediction estimates help inform prostate cancer burden and facilitate efficient healthcare delivery.

Background: Pelvic floor disorders including stress urinary incontinence and/or pelvic organ prolapse affect more than 50% of Australian women. Pelvic floor disorders cause a wide range of symptoms including painful urination, constipation and lower back pain. Previous surgical treatment may also affect the presence of pelvic symptoms, including pelvic pain, vaginal pain and dyspareunia which can lead to poor health-related quality of life. Patient-reported outcome measures are an important way of examining the health-related quality of life of women with pelvic floor disorders pre- and post-surgery, however, there are very few patient-reported outcome measures measuring this important domain of pelvic or vaginal pain. This paper aims to identify and compare patient-reported outcome measures for pain in women with a pelvic floor disorder in the existing literature, as well as to explore and highlight the gaps regarding the development and validation of a pain instrument. This review also aims to describe the modes and methods for administration of the instruments. Methods: This review will be conducted based on the Preferred Reporting Items for Systematic review and Meta-Analysis Protocols guideline and checklist. Ovid MEDLINE, Ovid Embase, CINAHL Plus and Ovid PsychInfo databases as well as the grey literature will be searched for studies that use, develop or implement patient-reported outcome measures for pain as an HRQoL outcome in adult women with a pelvic floor disorder pre- and post-surgery. Studies reporting on the psychometric properties of patient-reported outcome measures will be included. An independent researcher will screen the title and abstracts of the studies. Two independent researchers will undertake full-text review and any disagreements will be resolved through discussion and consensus. The final selected studies will undergo data extraction, qualitative analysis and synthesis. Discussion: The findings of this review will assist with the development and validation of new pain-specific patient-reported outcome measures for women with pelvic floor disorder in the registry or clinical practice. Trial registration: CRD42022319663

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.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.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.

Introduction and hypothesis Patient-reported outcome measures (PROMs) are helpful instruments when measuring and reporting changes in patient health status (Al Sayah et al. J Patient Rep Outcomes 5 (Suppl 2):99, 2021) such as the health-related quality of life (HrQoL) of women with pelvic organ prolapse (POP) and stress urinary incontinence (SUI). The Australasian Pelvic Floor Procedure Registry (APFPR) aims to increase capacity for women to report surgical outcomes through the collection of HrQoL data (Ruseckaite et al. Qual Life Res. 2021) but currently lacks a pain-specific PROM for women with pelvic floor disorders (PFDs), particularly POP and SUI. This review aims to systematically review the existing literature and identify instruments that measure pain in women with POP and SUI for inclusion within the APFPR, which reports on complications from these conditions. Methods We conducted a literature search on OVID MEDLINE, Embase, CINAHL, PsycINFO and EMCARE databases in addition to Google Scholar and grey literature to identify studies from inception to April 2021. Full-text studies were included if they used PROMs to measure pain in women with POP and SUI. Two authors independently screened articles, extracted data and assessed methodological quality. Results From 2001 studies, 23 publications describing 19 different PROMs were included for analysis. Eight of these instruments were specific to the pelvic floor; four were only specific to pain and used across multiple disorders; three were generic quality of life instruments and four were other non-validated instruments such as focus group interviews. These instruments were not specific to pain in women with POP or SUI, as they did not identify all relevant domains such as the sensation, region and duration of pain, or incidents where onset of pain occurs. Conclusions The findings of this review suggest there are no current PROMs that are suitable pain-specific instruments for women with POP or SUI. This knowledge may inform and assist in the development of a new PROM to be implemented into the APFPR.

Clinical quality registries (CQRs) systematically collect data on pre-agreed markers of quality of care for a given procedure, that can be reliably and reproducibly defined and collected across multiple sites. Data is then risk adjusted, and comparisons may be used to benchmark performance. These data then inform quality improvement initiatives. CQRs require an overarching independent governance structure and surety of funding. CQRs rely upon whole of population enrolment to minimize the risk of selection bias, and often rely on the secondary use of sensitive health information, meaning that the processes for ethical review and consent to participation are different to clinical trials. Despite several local examples of CQR improving practice in Australia and Aotearoa New Zealand, providing substantial cost-benefit to the community, there remain significant barriers to CQR implementation and functions. These include the difficulty of accurate data capture, lack of a fit for purpose ethical review system, the constraints of existing Qualified Privilege legislations and the need for protected funding. Whilst the Australian Government has released a 10-year strategy for CQR reform, and the Aotearoa New Zealand Government has included registries in the planned Health New Zealand reforms for the public sector, we believe more urgent implementation of strategies to overcome these barriers is needed if CQRs are to have the impact on quality of care our Communities deserve.

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.

Context Endocrine neoplasia syndromes are phenotypically complex, and there is a misconception that they are universally rare. Genetic alterations are increasingly recognized; however, true prevalence is unknown. The purpose of a clinical registry is to monitor the quality of health care delivered to a specified group of patients through the collection, analysis, and reporting of relevant health-related information. This leads to improved clinical practice, decision-making, patient satisfaction, and outcome. Objective This review aims to identify, compare, and contrast active registries worldwide that capture data relevant to hereditary endocrine tumors (HETs). Methods Clinical registries were identified using a systematic approach from publications (Ovid MEDLINE, EMBASE) peer consultation, clinical trials, and web searches. Inclusion criteria were hereditary endocrine tumors, clinical registries, and English language. Exclusion criteria were institutional audits, absence of clinical data, or inactivity. Details surrounding general characteristics, funding, data fields, collection periods, and entry methods were collated. Results Fifteen registries specific for HET were shortlisted with 136 affiliated peer-reviewed manuscripts. Conclusion There are few clinical registries specific to HET. Most of these are European, and the data collected are highly variable. Further research into their effectiveness is warranted. We note the absence of an Australian registry for all HET, which would provide potential health and economic gains. This review presents a unique opportunity to harmonize registry data for HET locally and further afield.

Introduction and hypothesis The Australasian Pelvic Floor Procedure Registry (APFPR) collects both clinical and health-related quality of life (HRQoL) data on women undergoing surgery using a prosthesis such as mesh for pelvic organ prolapse (POP) and stress urinary incontinence (SUI). The registry lacks a suitable instrument to assess pain in women following mesh surgery for SUI and POP. This qualitative study describes the views on pain following mesh surgery in women and clinicians through the development of a conceptual framework, which may inform the development of a new instrument for the APFPR. Methods We conducted semi-structured interviews with women following mesh surgery for POP and SUI (n=17) and clinicians (n=6) in Victoria, Australia. We sought to reveal aspects of any sort of pain after a pelvic floor procedure. Interviews covered sensation, region, continuity of pain, triggers, and the mode and method of administration for a new pain-specific patient-reported outcome measure. Data were analysed using thematic analysis. Results We identified the important components of pain felt by women with POP and SUI after surgery using mesh. From the seven themes outlined, a conceptual framework was developed compiling related components of pain into six specific domains. Conclusions This study identifies the important components of pain felt by women following mesh surgery. It is hoped that the development of a pain-specific PROM, as supported by clinicians, will assist in the timely and appropriate diagnosis and management of POP and SUI.

Background: The Australasian Pelvic Floor Procedure Registry (APFPR) captures clinical and surgical data in women undergoing pelvic floor procedures. The inclusion of patient reported outcome measures (PROMs) in the APFPR is a critical activity providing the additional patient perspective of their condition prior to surgery as well as monitoring beyond the usual post-surgical follow-up time. This study aimed to evaluate the acceptability of seven PROMs for women with pelvic organ prolapse (POP) and to determine the most suitable instrument for the APFPR. Methods: Semi-structured qualitative interviews were conducted with women with POP (n = 15) and their treating clinicians (n = 11) in Victoria, Australia. Interview topics covered appropriateness, content, and acceptability of seven POP-specific instruments identified through the literature to determine their suitability and acceptability for inclusion in the APFPR. We analysed the interview data using conventional content analysis. Results: All study participants agreed that PROMs were needed for the APFPR. Both women and clinicians suggested that some of the instruments were ambiguous, too long and confusing. The Australian Pelvic Floor Questionnaire was accepted widely amongst women and clinicians and recommended for inclusion in the APFPR. All participants agreed it would be appropriate to capture PROMs before surgery, and then followed up post-surgically. Email, phone call or postal mail-out were the preferred options for PROMs data collection. Conclusion: Most women and clinicians supported incorporating PROMs in the APFPR. Study participants believed that capturing PROMs would have potential use in individual care and improve outcomes of women with POP.

The onset of the COVID-19 pandemic was associated with restricted community movement and limited access to healthcare facilities, resulting in changed clinical service delivery to people with cystic fibrosis (CF). This study aimed to determine clinical outcomes of Australian adults and children with CF in the 12-months following the onset of the COVID-19 pandemic.This longitudinal cohort study used national registry data. Primary outcomes were 12-month change in percent predicted forced expiratory volume in one second (FEV1 %pred), body mass index (BMI) in adults and BMI z-scores in children. A piecewise linear mixed-effects model was used to determine trends in outcomes before and after pandemic onset.Data were available for 3662 individuals (median age 19.6 years, range 0-82). When trends in outcomes before and after pandemic onset were compared; FEV1 %pred went from a mean annual decline of -0.13% (95%CI -0.36 to 0.11) to a mean improvement of 1.76% (95%CI 1.46-2.05). Annual trend in BMI improved from 0.03 kg/mIn the 12-months following the onset of the COVID-19 pandemic, there was an improvement in the clinical outcomes of people with CF when compared to the pre-pandemic period.

Background Patient-reported outcome measures (PROMs) are an important tool for evaluating outcomes following breast device procedures and are used by breast device registries. PROMs can assist with device monitoring through benchmarked outcomes but need to account for demographic and clinical factors that may affect PROM responses. Objectives This study aimed to develop appropriate risk-adjustment models for the benchmarking of PROM data to accurately track device outcomes and identify outliers in an equitable manner. Methods Data for this study were obtained from the Australian Breast Device Registry, which consists of a large prospective cohort of patients with primary breast implants. The 5-question BREAST-Q implant surveillance module was used to assess PROMs at 1 year following implant insertion. Logistic regression models were used to evaluate associations between demographic and clinical characteristics and PROMs separately by implant indication. Final multivariate risk-adjustment models were built sequentially, assessing the independent significant association of these variables. Results In total, 2221 reconstructive and 12,045 aesthetic primary breast implants with complete 1-year follow-up PROMs were included in the study. Indication for operation (post-cancer, risk reduction, or developmental deformity) was included in the final model for all reconstructive implant PROMs. Site type (private or public hospital) was included in the final breast reconstruction model for look, rippling, and tightness. Age at operation was included in the reconstruction models for rippling and tightness and in the aesthetic models for look, rippling, pain, and tightness. Conclusions These multivariate models will be useful for equitable benchmarking of breast devices by PROMs to help track device performance. Level of Evidence: 2

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). 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. 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. 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.

Clinical registries that monitor and review outcomes for patients with cystic fibrosis have existed internationally for many decades. However, their purpose continues to evolve and now includes the capability to support clinical effectiveness research, clinical trials and Phase IV studies, and international data comparisons and projects. To achieve this, registries must regularly update the information that they collect and ensure design that is adaptable and flexible to changing needs. The Australian Cystic Fibrosis Data Registry commenced in 1998, and in 2018-19 undertook a transformation to enable it to meet the needs of multiple stakeholders into the future. This included a comprehensive, multidisciplinary review of the registry's data elements, and a redesign and rebuild of the registry's database. The data element review comprised the processes of alignment, comparison, selection, consolidation, revision and definition of finalised data elements. The database redesign included attention to each of the registry functions of data collection, storage and management, and reporting. The revision of a national data collection system is a time-intensive process, and requires significant clinical and other expert engagement. The resulting database, while being continually refined, is now fit for purpose to support Australian clinicians and patients with CF to receive best practice care.

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.

Registry randomised clinical trials (RRCTs) have the potential to provide pragmatic answers to important clinical questions. RRCTs can be embedded into large population-based registries or smaller single site registries to provide timely answers at a reduced cost compared with traditional randomised controlled trials. RRCTs can take a number of forms in addition to the traditional individual-level randomised trial, including parallel group trials, platform or adaptive trials, cluster randomised trials and cluster randomised stepped-wedge trials. From an implementation perspective, initially it is advantageous to embed RRCT into well-established registries as these have typically already overcome any issues with end point validation and adjudication. With advances in data linkage and data quality, RRCTs can play an important role in answering clinical questions in a pragmatic, cost-effective way.

Objectives The objective of this study was to evaluate geographical and temporal variations in prostate cancer incidence in Victoria, Australia. Study design & methods This study analysed 105,349 cases of incident prostate cancer between 1982 and 2016 from the population-based Victorian Cancer Registry. We performed Poisson regression analyses to identify an association between an annual number of prostate cancer counts, prostate-specific antigen (PSA) tests and the elderly male population (≥65) after adjusting for population at risk and years. We also applied Bayesian spatial-temporal models to determine any association with prostate cancer incidence and area-level factors. Results The overall trend of the age-standardized prostate cancer incidence was increasing. The highest age-specific incidence was observed among people aged 65–74 years in the pre- and post-PSA periods. Every increase in 1000 PSA tests per 100,000 population, prostate cancer incidence increased by 17% (relative risk [RR] = 1.17, 95% confidence interval [CI] = 1.13–1.22). A 1% increase in the proportion of the male population (≥65) correlated with a 7% increase in prostate cancer cases (RR = 1.07, 95% CI = 1.06–1.10). Compared with early PSA periods, decreasing trends of low-grade cases and growing trends of high- and intermediate-grade cases were observed after a decline in PSA test usage in late PSA periods. Men living in the most socioeconomically advantaged postal areas had a decreased risk of prostate cancer (RR = 0.914, 95% CI = 0.858–0.976). Conclusions Age-specific risk of developing biological prostate cancer, temporal changes in PSA testing and an increasingly elderly population contributed to an increasing trend of prostate cancer incidence. When incidence trends were investigated at a more granular geographic level, socioeconomically advantaged status was associated with decreased prostate cancer risk.

Mortality from non-small cell lung cancer (NSCLC) exhibits substantial geographical disparities. However, there is little evidence on whether this variation could be attributed to patients' clinical characteristics and/or socioeconomic inequalities. This study evaluated the independent and relative contribution of the individual- and area-level risk factors on geographic variation in 2-year all-cause mortality among NSCLC patients. In the Hierarchical-related regression approach, we used the Bayesian spatial multilevel logistic regression model to combine individual- and area-level predictors with outcomes while accounting for geographically structured and unstructured correlation. Individual-level data included 3330 NSCLC cases reported to the Victoria Lung Cancer Registry between 2011 and 2016. Area-level data comprised socioeconomic disadvantage, remoteness and pollution data at the postal area level in Victoria, Australia. With the inclusion of significant individual- and area-level risk factors, timely (≤14 days) first definitive treatment (odds ratio [OR] = 0.73, 95% credible interval [Crl] = 0.56-0.94) and multidisciplinary meetings (MDM) (OR = 0.74, 95% Crl = 0.59-0.93) showed an independent association with a lower likelihood of NSCLC 2-year all-cause mortality. Timely and delayed (>14 days) first nondefinitive treatment, no treatment, advanced clinical stage, smoking, poor performance status, public hospital insurance and area-level deprivation were independently associated with a higher likelihood of 2- and 5-year all-cause mortality. NSCLC's 2-year all-cause mortality exhibited substantial geographic variation, mainly associated with timeliness and receipt of first definitive treatment, no treatment followed by patient prognostic factors with some contribution from area-level deprivation, MDM and public hospital insurance. This study highlights NSCLC patients should receive the first definitive treatment within the recommended 14-days from diagnosis.

The year 2020 will be remembered as the year of the most significant global pandemic since the Spanish influenza. As Severe Acute Respiratory Syndrome coronavirus 2 (SARS-CoV-2) gradually encompasses the globe, it leaves a trail of destruction in its wake. Hundreds of thousands of direct lives lost, millions of persons affected with the disease, potentially with long-term health consequences, disruption to global travel and trade, and dislocation of communities and individual lives. At an international, national and community level, leaders across all sectors have been required to respond to both direct and indirect effects of this crisis, with little time for preparation, and in a constantly changing environment. For leaders, this significant uncertainty exacerbates the challenges associated with decision making and requires a rapidly adaptive response not usually associated with leadership in more ‘business-as-usual’ times.1 Leadership examples and frameworks during crises exist from the military and emergency management sectors. However, a key challenge of a pandemic is that an effective management of the situation requires large-scale human behaviour change. When adoption is insufficient, collective benefits are not guaranteed. A global pandemic is therefore a ‘litmus test of trust in a health system’ (p.214). 2 Trust is an individual’s expectation or belief, often in circumstances of vulnerability, that the actions or motives of another person are honest, fair and based on integrity (follow sound ethical principles).3 Trust can be at a system, organisational or individual level. It can be inspired by confidence from past behaviours, however, it is also dynamic, being developed de novo from individual or organisational relationships. Trust allows a person with less knowledge, power or ability to process complex information, to rely on another individual or institution to make decisions aligned with their well-being. Thus, trust has historically been a cornerstone of clinical care and clinician–patient …

Refereed/Peer-reviewed Background: Studies related to clinical quality indicators (CQIs) in dementia have focused on hospitalizations, medication management, and safety. Less attention has been paid to indicators related to primary and secondary care. OBJECTIVE: To evaluate the incidence of primary and secondary care CQIs for Australians with dementia using government-subsidized aged care. The examined CQIs were: comprehensive medication reviews, 75+ health assessments, comprehensive geriatric assessments, chronic disease management plans, general practitioner (GP) mental health treatment plans, and psychiatrist attendances. Methods: Retrospective cohort study (2011-2016) of 255,458 individuals. National trend analyses estimated incidence rates and 95% confidence intervals (CI) using Poisson or negative binomial regression. Associations were assessed using backward stepwise multivariate Poisson or negative binomial regression model, as appropriate. Funnel plots examined geographic and permanent residential aged care (PRAC) facility variation. Results: CQI incidence increased in all CQIs but medication reviews. For the overall cohort, 75+ health assessments increased from 1.07/1000 person-days to 1.16/1000 person-days (adjusted incidence rate ratio (aIRR) = 1.03, 95% CI 1.02-1.03).Comprehensive geriatric assessments increased from 0.24 to 0.37/1000 person-days (aIRR = 1.12, 95% CI 1.10-1.14). GP mental health treatment plans increased from 0.04 to 0.07/1000 person-days (aIRR = 1.13, 95% CI 1.12-1.15). Psychiatric attendances increased from 0.09 to 0.11/1000 person-days (aIRR = 1.05, 95% CI 1.03-1.07). Being female, older, having fewer comorbidities, and living outside a major city were associated with lower likelihood of using the services. Large geographical and PRAC facility variation was observed (0-92%). Conclusion: Better use of primary and secondary care services to address needs of individuals with dementia is urgently needed.

Rasa Ruseckaite, Ashika D Maharaj, Karolina Krysinska, Joanne Dean, Susannah Ahern Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, AustraliaCorrespondence: Rasa RuseckaiteDepartment of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria 3004, AustraliaTel +61 3 9903 0437Email rasa.ruseckaite@monash.eduPurpose: Patient-centred and value-based health-care organisations are increasingly recognising the importance of the patient perspective in the measurement and evaluation of health outcomes. This has been primarily implemented using patient-reported outcome measures (PROMs). Clinical quality registries (CQRs) are specifically designed to improve direct clinical care, benchmark health-care provision and inform health service planning and policy. Despite CQRs having incorporated the patient perspective to support the evaluation of health-care provision, no evidence-based guidelines for inclusion of PROMs in CQRs exist. This has led to substantial heterogeneity in capturing and reporting PROMs within this setting. This publication is the first in a series describing the development of evidence-informed guidelines for PROMs inclusion within CQRs in Australia.Methods: This study consisted of three components: 1) a literature review of existing evidence of guidelines, enablers, barriers, and lessons learnt of PROMs use within the CQRs setting; 2) a survey of Australian CQRs to determine current practices for PROMs use and reporting; and 3) development of a preliminary conceptual framework for PROMs inclusion in CQRs.Results: Content analysis of the literature review and survey of 66 Australian registries elicited eight categories for the conceptual framework. The framework covers eight components: rationale, setting, ethics, selection of PROMs, administration, data management, statistical methods, feedback, and reporting.Conclusion: We developed a preliminary conceptual framework, which classified findings, from both the literature and the survey, into broad categories ranging from initial development to outcome dissemination providing the structure for development of guidelines in the next phase of this project, engaging national and international leaders in health-related quality of life research, clinicians, researchers, patient advocates and consumers.Keywords: quality of life, registry, outcomes, patient voice

Purpose During the COVID-19 pandemic, widespread public health measures were implemented to control community transmission. The association between these measures and health-related quality of life (HRQOL) among patients following percutaneous coronary intervention has not been studied. Methods We included consecutive patients undergoing percutaneous coronary intervention (PCI) in the state-wide Victorian Cardiac Outcomes Registry between 1/3/2020 and 30/9/2020 (COVID-19 period; n = 5024), with a historical control group from the identical period one year prior (control period; n = 5041). HRQOL assessment was performed via telephone follow-up 30 days following PCI using the 3-level EQ-5D questionnaire and Australian-specific index values. Results Baseline characteristics were similar between groups, but during the COVID-19 period indication for PCI was more common for acute coronary syndromes. No patients undergoing PCI were infected with COVID-19 at the time of their procedure. EQ-5D visual analogue score (VAS), index score, and individual components were higher at 30 days following PCI during the COVID-19 period (all P

ObjectiveTo describe models of academic health science centres (AHSCs) across developing countries, in order to inform AHSC development in Indonesia.DesignScoping review with systematic methods.Data sourcesOvid MEDLINE, ProQuest Central, Wiley online library, Scopus and Web of Sciences were searched for relevant publications from 1 January 2015 to 1 December 2020. ‘Grey literature' was hand searched by targeted website searches, Google searches, as well as personal communication held with stakeholders in Indonesia specifically. Relevant articles regarding AHSCs in developing countries are included. The review would be synthesised to focus on the purpose, structure and core activities of AHSCs. Strategies for success were also considered.ResultsTwenty-six recognised AHSCs in developing countries were identified, located in Asia (n=13), Europe (n=1), South America (n=7) and Africa (n=5). Innovation, health system improvement and enhancement in academic capacity were the common visions. Most centres are functionally integrated and university-led. Most AHSCs include community health services to complement primary stakeholders such as academic institutions and hospitals. Limited information was identified regarding patient and public involvement and workforce capacity building. Five AHSCs have been piloted in Indonesia since 2018, integrating universities, academic hospitals and provincial health offices. However, information regarding their core activities and successes is limited.ConclusionsThe review suggests that limited published data are available on AHSC models in developing countries, but they still provide important insight into AHSC development in Indonesia. Innovation and health systems strengthening are the common visions. Functional integration with university leadership is the most common model of governance. Other than universities and hospitals, community health centres, research centres and regional health offices are common partners. There is a little description of community engagement and workforce capacity building.

BackgroundThe 12-item Short-Form Health Survey version 2 (SF-12v2), a widely used, generic patient-reported measure of health status that provides summary scores of physical and mental health. No study to date has examined the measurement properties of the SF-12v2 in patients with lung cancer using Rasch analysis. The aim of this study was to extend the psychometric evaluations of the SF-12 within the lung cancer population to ensure its validity and reliability to assess the health status in this population.MethodsParticipants in the Victorian Lung Cancer Registry (VLCR) who completed the SF-12v2 between 2012 and 2016 were included in this study. The structural validity of the SF-12v2 was assessed using Rasch analysis. Overall fit to the Rasch measurement model was examined as well as five key measurement properties: uni-dimensionality, response thresholds, internal consistency, measurement invariance and targeting.ResultsA total of 342 participants completed the SF-12v2 three months following their lung cancer diagnosis. The SF-12 Physical Component Score (PCS-12) did not fit the overall Rasch measurement model (χ2107.0;p 235.1;p = 0.07), reasonable targeting and good internal consistency (PSI 0.81).ConclusionsRasch analysis suggests that there is general support for the reliability of the SF-12v2 as a measure of physical and mental health in people with lung cancer. However, the appropriateness of some items (e.g. pain) in the PCS-12 is questionable and further refinement of the scale including changing the response options may be required to improve the ability of the SF-12v2 to more appropriately assess the health status of this population.

Objective Hereditary endocrine tumors (HET) were among the first group of tumors where predisposition syndromes were recognized. The utility of genetic awareness is having the capacity to treat at an earlier stage, screen for other manifestations and initiate family cascade testing. The aim of this narrative review is to describe the most common hereditary syndromes associated with frequently encountered endocrine tumors, with an emphasis on screening and surveillance. Methods A MEDLINE search of articles for relevance to endocrine tumors and hereditary syndromes was performed. Results The most common hereditary syndromes associated with frequently encountered endocrine tumors are described in terms of prevalence, genotype, phenotype, penetrance of malignancy, surgical management, screening, and surveillance. Conclusion Medical practitioners involved in the care of patients with endocrine tumors should have an index of suspicion for an underlying hereditary syndrome. Interdisciplinary care is integral to successful, long-term management of such patients and affected family members.

Predicting lung cancer cases at the small-area level is helpful to quantify the lung cancer burden for health planning purposes at the local geographic level. Using Victorian Cancer Registry (2001–2018) data, this study aims to forecast lung cancer counts at the local government area (LGA) level over the next ten years (2019–2028) in Victoria, Australia. We used the Age-Period-Cohort approach to estimate the annual age-specific incidence and utilised Bayesian spatio-temporal models that account for non-linear temporal trends and area-level risk factors. Compared to 2001, lung cancer incidence increased by 28.82% from 1353 to 1743 cases for men and 78.79% from 759 to 1357 cases for women in 2018. Lung cancer counts are expected to reach 2515 cases for men and 1909 cases for women in 2028, with a corresponding 44% and 41% increase. The majority of LGAs are projected to have an increasing trend for both men and women by 2028. Unexplained area-level spatial variation substantially reduced after adjusting for the elderly population in the model. Male and female lung cancer cases are projected to rise at the state level and in each LGA in the next ten years. Population growth and an ageing population largely contributed to this rise.