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Background Ten per cent of women of reproductive age suffer from endometriosis, a painful and incurable disease that leaves women with severe implications for their health and overall well-being. Due to the absence of a cure and the limited effectiveness of available treatments, acquiring accurate information is paramount for women to successfully navigate both their daily lives and the complexities of the healthcare system. This scoping review aimed to map the current literature on women with endometriosis information needs, their information seeking behaviour, and the format and scope of current information resources available. Methods The scoping review was conducted using the JBI methodology for scoping reviews and reported according to the PRISMA-ScR statement. The final search was conducted in August 2024, through the databases Medline, Cinahl, Embase, Scopus, and WebofScience. Studies on information resources on endometriosis and information seeking behaviour as well as information needs of women with endometriosis were eligible for inclusion. Results The majority of the 25 included studies focused on information resources, specifically webpages and social media sites. While few studies analysed information seeking behaviour and information needs, the evidence shows women’s high interest in a broad spectrum of information topics. Across all studies, the internet was the most important access point for information. Conclusion Addressing the absence of systematic analyses on the information seeking behaviour and needs of women with endometriosis is crucial for future research. This step is essential for the development of customised information resources that cater specifically to the diverse needs of women affected by endometriosis.

To provide a review of prediction models that have been used to measure clinical or pathological progression of chronic kidney disease (CKD). Scoping review. Medline, EMBASE, CINAHL and Scopus from the year 2011 to 17th February 2022. All English written studies that are published in peer-reviewed journals in any country, that developed at least a statistical or computational model that predicted the risk of CKD progression. Eligible studies for full text review were assessed on the methods that were used to predict the progression of CKD. The type of information extracted included: the author(s), title of article, year of publication, study dates, study location, number of participants, study design, predicted outcomes, type of prediction model, prediction variables used, validation assessment, limitations and implications. From 516 studies, 33 were included for full-text review. A qualitative analysis of the articles was compared following the extracted information. The study populations across the studies were heterogenous and data acquired by the studies were sourced from different levels and locations of healthcare systems. 31 studies implemented supervised models, and 2 studies included unsupervised models. Regardless of the model used, the predicted outcome included measurement of risk of progression towards end-stage kidney disease (ESKD) of related definitions, over given time intervals. However, there is a lack of reporting consistency on details of the development of their prediction models. Researchers are working towards producing an effective model to provide key insights into the progression of CKD. This review found that cox regression modelling was predominantly used among the small number of studies in the review. This made it difficult to perform a comparison between ML algorithms, more so when different validation methods were used in different cohort types. There needs to be increased investment in a more consistent and reproducible approach for future studies looking to develop risk prediction models for CKD progression.

To investigate public willingness to share sensitive health information for research, health policy and clinical practice. A total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression. When asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement. The findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.

To assess if burn injury in older adults is associated with changes in long-term all-cause mortality and to estimate the increased risk of death attributable to burn injury. We conducted a population-based matched longitudinal study - based on administrative data from Western Australia's hospital morbidity data system and death register. A cohort of 6014 individuals who were aged at least 45 years when hospitalized for a first burn injury in 1980-2012 was identified. A non-injury comparison cohort, randomly selected from Western Australia's electoral roll (n = 25 759), was matched to the patients. We used Kaplan-Meier plots and Cox proportional hazards regression to analyse the data and generated mortality rate ratios and attributable risk percentages. For those hospitalized with burns, 180 (3%) died in hospital and 2498 (42%) died after discharge. Individuals with burn injury had a 1.4-fold greater mortality rate than those with no injury (95% confidence interval, CI: 1.3-1.5). In this cohort, the long-term mortality attributable to burn injury was 29%. Mortality risk was increased by both severe and minor burns, with adjusted mortality rate ratios of 1.3 (95% CI: 1.1-1.9) and 2.1 (95% CI: 1.9-2.3), respectively. Burn injury is associated with increased long-term mortality. In our study population, sole reliance on data on in-hospital deaths would lead to an underestimate of the true mortality burden associated with burn injury.

Background In Australia, diabetes is the fastest growing chronic condition, with prevalence trebling over the past three decades. Despite reported sex differences in diabetes outcomes, disparities in management and health targets remain unclear. This population-based retrospective study used MedicineInsight primary healthcare data to investigate sex differences in diabetes prevalence, incidence, management, and achievement of health targets. Methods Adults (aged ≥ 18 years) attending 39 general practices in Western Australia were included. Diabetes incidence and prevalence were estimated by age category. Health targets assessed included body mass index (BMI), blood pressure, blood lipids, and glycated haemoglobin (HbA 1c ) levels. Medical management of diabetes-associated conditions was also investigated. Time-to-incident diabetes was modelled using a Weibull regression. A multilevel mixed-effects logistic regression model investigated risk-adjusted sex differences in achieving the HbA 1c health target (HbA 1c  ≤ 7.0% (≤ 53 mmol/mol)). Results Records of 668,891 individuals (53.4% women) were analysed. Diabetes prevalence ranged from 1.3% (95% confidence interval (CI) 1.2%-1.3%) in those aged < 50 years to 7.2% (95% CI 7.1%-7.3%) in those aged ≥ 50 years and was overall higher in men. In patients younger than 30 years, incidence was higher in women, with this reversing after the age of 50. Among patients with diabetes, BMI ≥ 35 kg/m 2 was more prevalent in women, whereas current and past smoking were more common in men. Women were less likely than men to achieve lipid health targets and less likely to receive prescriptions for lipid, blood pressure, or glucose-lowering agents. Men with incident diabetes were 21% less likely than women to meet the HbA1 c target. Similarly, ever recorded retinopathy, nephropathy, neuropathy, hypertension, dyslipidaemia, coronary heart disease, heart failure, peripheral vascular disease and peripheral artery disease were higher in men than women. Conclusions This research underscores variations in diabetes epidemiology and management based on sex. Tailoring diabetes management should consider the patient's sex.

Background General practice data are increasingly used to estimate chronic disease prevalence. Concerns remain about data completeness and fragmentation, particularly when patients attend multiple practices. Previous studies have restricted analyses to only include ‘active’ patients (frequent clinical encounters), assuming that these records are more complete and representative; however, the validity of this approach has not been tested. This study examines whether the prevalence estimated from patient-level (linked) general practice records differs from the common approach of using active practice-level (unlinked) general practice records. Methods This retrospective cohort study used de-identified electronic health records from the MedicineInsight dataset, comprising 694,004 patients aged 18 years and older from 39 general practices in Western Australia, covering approximately 32.7% of the state’s adult population as of January 26, 2022. Patient demographics, diagnoses, and clinical encounters were analysed. Results Condition prevalence estimates vary depending on cohort definition and the inclusion of patients with low general practice engagement. Active patients had higher median encounters (9 vs. 4) and consistently higher condition prevalence across all chronic diseases, including hypertension (18.2% vs. 11.6%), diabetes (7.0% vs. 4.6%), and asthma (11.3% vs. 8.1%), demonstrating systematic overestimation when analyses exclude patients with lower healthcare utilisation. The patient-level cohort captured more total diagnoses due to its larger denominator (257,023 total diagnosed conditions across the N  = 608,000 patient-level cohort, versus 133,235 total diagnosed conditions across N  = 201,817 practice-level active patients). Conclusion Diagnostic information in general practice records is often dispersed across practices, affecting population planning and research. Linking patient records across practices enhances diagnostic visibility and reveals a more complete picture of chronic disease burden, highlighting the risk of overestimating disease prevalence when analyses are restricted to active patient records alone. This overestimation likely results from excluding healthier patients with fewer healthcare encounters. Small differences in prevalence estimates can have substantial implications on population-level planning, potentially affecting funding allocations, clinical guideline, and workforce decisions. These findings suggest the need for linked general practice datasets to improve the accuracy of prevalence estimates and inform effective policy and resource allocation decisions in primary care.

Background The COVID-19 pandemic resulted in an uptake of teleconsultations across the healthcare sector, including for allied health services. However, (dis-)advantages specific to allied health services are under-researched. The aim of this scoping review is the understand the (dis-)advantages patients and providers perceive when using teleconsultations for allied health services. Methods This scoping review was conducted using the JBI methodology for scoping reviews and reported according to the PRISMA-ScR statement. The final search was conducted in January 2024, through the databases MEDLINE Complete, EMBASE, CINAHL, PsycINFO, AMED Allied and Complementary Medicine. Studies were eligible for inclusion if they reported qualitative findings on the (dis-)advantages of teleconsultations for allied health services from a patient’s and/or provider’s perspective. The screening process was conducted by two independent researchers, while the data extraction and inductive analysis were performed by the first author. Results We identified 116 eligible articles. Eight categories were identified from a patient’s perspective, including improved access to care, resource savings, convenience, comfort, reduced infection risk, effects on therapy, privacy, and patient-provider relationship. From the provider’s perspective, additional categories included telehealth as a trigger for change and improvement, the patients in their own home, disruptions, interpreters, efficiency, changes to workday, and safety and risks. Conclusion While there are clear advantages, such as improved access to care, and disadvantages, such as the lack of hands-on treatment, the impact of telehealth often depends on the individual context of both the provider and the patient. Although some aspects are broadly relevant across all allied health professions, there are notable differences in the suitability of telehealth for specific services. Understanding the disadvantages and advantages of teleconsultations is key to informing policies and identifying suitable applications of telehealth.

Emergency department (ED) overcrowding remains a persistent challenge in global public health, leading to detrimental outcomes for patients and healthcare professionals. Traditional approaches to improve this issue have been insufficient, prompting exploration of novel strategies such as virtual care interventions. Our team developed the first comprehensive statewide virtual ED in Australia, the Victorian Virtual Emergency Department, offering an alternative to in‐person care for non‐life‐threatening emergencies. Here, we present the development and ongoing refinement of this pioneering virtual care service, aiming to provide insights for hospital administrators and policymakers seeking to implement patient‐centric care solutions worldwide. By sharing our model of care, we hope to guide further work toward addressing the global problem of over crowded EDs.

Background The Centre for Data Linkage (CDL) has been established to enable national and cross-jurisdictional health-related research in Australia. It has been funded through the Population Health Research Network (PHRN), a national initiative established under the National Collaborative Research Infrastructure Strategy (NCRIS). This paper describes the development of the processes and methodology required to create cross-jurisdictional research infrastructure and enable aggregation of State and Territory linkages into a single linkage “map”. Methods The CDL has implemented a linkage model which incorporates best practice in data linkage and adheres to data integration principles set down by the Australian Government. Working closely with data custodians and State-based data linkage facilities, the CDL has designed and implemented a linkage system to enable research at national or cross-jurisdictional level. A secure operational environment has also been established with strong governance arrangements to maximise privacy and the confidentiality of data. Results The development and implementation of a cross-jurisdictional linkage model overcomes a number of challenges associated with the federated nature of health data collections in Australia. The infrastructure expands Australia’s data linkage capability and provides opportunities for population-level research. The CDL linkage model, infrastructure architecture and governance arrangements are presented. The quality and capability of the new infrastructure is demonstrated through the conduct of data linkage for the first PHRN Proof of Concept Collaboration project, where more than 25 million records were successfully linked to a very high quality. Conclusions This infrastructure provides researchers and policy-makers with the ability to undertake linkage-based research that extends across jurisdictional boundaries. It represents an advance in Australia’s national data linkage capabilities and sets the scene for stronger government-research collaboration.

Introduction Chronic kidney disease (CKD) is a significant burden on health systems globally, with limited up-to-date information on health system costs, particularly for non-dialysis patients. This study estimates the direct healthcare costs of CKD within Australia. Methods The study utilised the CKD.WA dataset, a linked repository for the state of Western Australia, containing public and private pathology, hospital, emergency and mortality data for over 2 million people, along with a secondary dataset of general practice records. Costs were calculated for individuals with CKD in 2019 and compared to controls without CKD to identify costs attributable to CKD. Cost items included hospital, emergency, medication, general practice, pathology, dialysis and outpatient services. Costs were expressed in 2023 AUD. Results There were 114,899 individuals with CKD in 2019. Average yearly costs attributable to CKD were $3,367 for Stage 1, $4,114 for Stage 2, $3,607 for Stage 3a, $6,572 for Stage 3b, $11,456 for Stage 4 and $62,558 for Stage 5. Non-dialysis hospital costs were the biggest contributor, followed by dialysis costs. The estimated total cost of CKD to Australia was $8.3 billion for 2019. Conclusion These findings highlight the significant cost burden of CKD. While CKD costs per individual are highest in later stages, the greater number of early-stage CKD cases means the majority of the cost burden is located among early-stage cases. Primary and secondary prevention strategies are likely key to reducing costs.