Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.

Maximising data value and avoiding data waste: a validation study in stroke research.

OBJECTIVES: To determine the feasibility of linking data from the Australian Stroke Clinical Registry (AuSCR), the National Death Index (NDI), and state-managed databases for hospital admissions and emergency presentations; to evaluate data completeness and concordance between datasets for common variables. DESIGN, SETTING, PARTICIPANTS: Cohort design; probabilistic/deterministic data linkage of merged records for patients treated in hospital for stroke or transient ischaemic attack from New South Wales, Queensland, Victoria, and Western Australia. MAIN OUTCOME MEASURES: Descriptive statistics for data matching success; concordance of demographic variables common to linked databases; sensitivity and specificity of AuSCR in-hospital death data for predicting NDI registrations. RESULTS: Data for 16 214 patients registered in the AuSCR during 2009-2013 were linked with one or more state datasets: 15 482 matches (95%) with hospital admissions data, and 12 902 matches (80%) with emergency department presentations data were made. Concordance of AuSCR and hospital admissions data exceeded 99% for sex, age, in-hospital death (each κ = 0.99), and Indigenous status (κ = 0.83). Of 1498 registrants identified in the AuSCR as dying in hospital, 1440 (96%) were also recorded by the NDI as dying in hospital. In-hospital death in AuSCR data had 98.7% sensitivity and 99.6% specificity for predicting in-hospital death in the NDI. CONCLUSION: We report the first linkage of data from an Australian national clinical quality disease registry with routinely collected data from several national and state government health datasets. Data linkage enriches the clinical registry dataset and provides additional information beyond that for the acute care setting and quality of life at follow-up, allowing clinical outcomes for people with stroke (mortality and hospital contacts) to be more comprehensively assessed.

Estimating parameters for probabilistic linkage of privacy-preserved datasets.

BACKGROUND: Probabilistic record linkage is a process used to bring together person-based records from within the same dataset (de-duplication) or from disparate datasets using pairwise comparisons and matching probabilities. The linkage strategy and associated match probabilities are often estimated through investigations into data quality and manual inspection. However, as privacy-preserved datasets comprise encrypted data, such methods are not possible. In this paper, we present a method for estimating the probabilities and threshold values for probabilistic privacy-preserved record linkage using Bloom filters. METHODS: Our method was tested through a simulation study using synthetic data, followed by an application using real-world administrative data. Synthetic datasets were generated with error rates from zero to 20% error. Our method was used to estimate parameters (probabilities and thresholds) for de-duplication linkages. Linkage quality was determined by F-measure. Each dataset was privacy-preserved using separate Bloom filters for each field. Match probabilities were estimated using the expectation-maximisation (EM) algorithm on the privacy-preserved data. Threshold cut-off values were determined by an extension to the EM algorithm allowing linkage quality to be estimated for each possible threshold. De-duplication linkages of each privacy-preserved dataset were performed using both estimated and calculated probabilities. Linkage quality using the F-measure at the estimated threshold values was also compared to the highest F-measure. Three large administrative datasets were used to demonstrate the applicability of the probability and threshold estimation technique on real-world data. RESULTS: Linkage of the synthetic datasets using the estimated probabilities produced an F-measure that was comparable to the F-measure using calculated probabilities, even with up to 20% error. Linkage of the administrative datasets using estimated probabilities produced an F-measure that was higher than the F-measure using calculated probabilities. Further, the threshold estimation yielded results for F-measure that were only slightly below the highest possible for those probabilities. CONCLUSIONS: The method appears highly accurate across a spectrum of datasets with varying degrees of error. As there are few alternatives for parameter estimation, the approach is a major step towards providing a complete operational approach for probabilistic linkage of privacy-preserved datasets.

Long-term mortality among older adults with burn injury: a population-based study in Australia.

OBJECTIVE: 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. METHODS: 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. FINDINGS: 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. CONCLUSION: 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.

Cross border hospital use: analysis using data linkage across four Australian states.

OBJECTIVE: To determine the quality and effectiveness of national data linkage capacity by performing a proof-of-concept project investigating cross-border hospital use and hospital-related deaths. DESIGN, PARTICIPANTS AND SETTING: Analysis of person-level linked hospital separation and death registration data of all public and private hospital patients in New South Wales, Queensland and Western Australia and of public hospital patients in South Australia, totalling 7.7 million hospital patients from 1 July 2004 to 30 June 2009. MAIN OUTCOME MEASURES: Counts and proportions of hospital stays and patient movement patterns. RESULTS: 223 262 patients (3.0%) travelled across a state border to attend hospitals, in particular, far northern and western NSW patients travelling to Queensland and SA hospitals, respectively. A further 48 575 patients (0.6%) moved their place of residence interstate between hospital visits, particularly to and from areas associated with major mining and tourism industries. Over 11 000 cross-border hospital transfers were also identified. Of patients who travelled across a state border to hospital, 2800 (1.3%) died in that hospital. An additional 496 deaths recorded in one jurisdiction occurred within 30 days of hospital separation from another jurisdiction. CONCLUSIONS: Access to person-level data linked across jurisdictions identified geographical hot spots of cross-border hospital use and hospital-related deaths in Australia. This has implications for planning of health service delivery and for longitudinal follow-up studies, particularly those involving mobile populations.

Accuracy and completeness of patient pathways--the benefits of national data linkage in Australia.

BACKGROUND: The technical challenges associated with national data linkage, and the extent of cross-border population movements, are explored as part of a pioneering research project. The project involved linking state-based hospital admission records and death registrations across Australia for a national study of hospital related deaths. METHODS: The project linked over 44 million morbidity and mortality records from four Australian states between 1st July 1999 and 31st December 2009 using probabilistic methods. The accuracy of the linkage was measured through a comparison with jurisdictional keys sourced from individual states. The extent of cross-border population movement between these states was also assessed. RESULTS: Data matching identified almost twelve million individuals across the four Australian states. The percentage of individuals from one state with records found in another ranged from 3-5%. Using jurisdictional keys to measure linkage quality, results indicate a high matching efficiency (F measure 97 to 99%), with linkage processing taking only a matter of days. CONCLUSIONS: The results demonstrate the feasibility and accuracy of undertaking cross jurisdictional linkage for national research. The benefits are substantial, particularly in relation to capturing the full complement of records in patient pathways as a result of cross-border population movements. The project identified a sizeable 'mobile' population with hospital records in more than one state. Research studies that focus on a single jurisdiction will under-enumerate the extent of hospital usage by individuals in the population. It is important that researchers understand and are aware of the impact of this missing hospital activity on their studies. The project highlights the need for an efficient and accurate data linkage system to support national research across Australia.

Privacy-preserving record linkage on large real world datasets.

Record linkage typically involves the use of dedicated linkage units who are supplied with personally identifying information to determine individuals from within and across datasets. The personally identifying information supplied to linkage units is separated from clinical information prior to release by data custodians. While this substantially reduces the risk of disclosure of sensitive information, some residual risks still exist and remain a concern for some custodians. In this paper we trial a method of record linkage which reduces privacy risk still further on large real world administrative data. The method uses encrypted personal identifying information (bloom filters) in a probability-based linkage framework. The privacy preserving linkage method was tested on ten years of New South Wales (NSW) and Western Australian (WA) hospital admissions data, comprising in total over 26 million records. No difference in linkage quality was found when the results were compared to traditional probabilistic methods using full unencrypted personal identifiers. This presents as a possible means of reducing privacy risks related to record linkage in population level research studies. It is hoped that through adaptations of this method or similar privacy preserving methods, risks related to information disclosure can be reduced so that the benefits of linked research taking place can be fully realised.

Technical challenges of providing record linkage services for research.

BACKGROUND: Record linkage techniques are widely used to enable health researchers to gain event based longitudinal information for entire populations. The task of record linkage is increasingly being undertaken by specialised linkage units (SLUs). In addition to the complexity of undertaking probabilistic record linkage, these units face additional technical challenges in providing record linkage 'as a service' for research. The extent of this functionality, and approaches to solving these issues, has had little focus in the record linkage literature. Few, if any, of the record linkage packages or systems currently used by SLUs include the full range of functions required. METHODS: This paper identifies and discusses some of the functions that are required or undertaken by SLUs in the provision of record linkage services. These include managing routine, on-going linkage; storing and handling changing data; handling different linkage scenarios; accommodating ever increasing datasets. Automated linkage processes are one way of ensuring consistency of results and scalability of service. RESULTS: Alternative solutions to some of these challenges are presented. By maintaining a full history of links, and storing pairwise information, many of the challenges around handling 'open' records, and providing automated managed extractions are solved. A number of these solutions were implemented as part of the development of the National Linkage System (NLS) by the Centre for Data Linkage (part of the Population Health Research Network) in Australia. CONCLUSIONS: The demand for, and complexity of, linkage services is growing. This presents as a challenge to SLUs as they seek to service the varying needs of dozens of research projects annually. Linkage units need to be both flexible and scalable to meet this demand. It is hoped the solutions presented here can help mitigate these difficulties.

Acute disseminated encephalomyelitis and transverse myelitis following COVID-19 vaccination - A self-controlled case series analysis.

Acute Disseminated Encephalomyelitis (ADEM) and Transverse Myelitis (TM) are within the group of immune mediated disorders of acquired demyelinating syndromes. Both have been described in temporal association following various vaccinations in case reports and case series and have been evaluated in observational studies. A recent analysis conducted by The Global Vaccine Data Network (GVDN) observed an excess of ADEM and TM cases following the adenoviral vectored ChAdOx1 nCoV-19 (AZD1222) and mRNA-1273 vaccines, compared with historically expected background rates from prior to the pandemic. Further epidemiologic studies were recommended to explore these potential associations. We utilized an Australian vaccine datalink, Vaccine Safety Health-Link (VSHL), to perform a self-controlled case series analysis for this purpose. VSHL was selected for this analysis as while VSHL data are utilised for GVDN association studies, they were not included in the GVDN observed expected analyses. The VSHL dataset contains vaccination records sourced from the Australian Immunisation Register, and hospital admission records from the Victorian Admitted Episodes Dataset for 6.7 million people. These datasets were used to determine the relative incidence (RI) of G040 (ADEM) and G373 (TM) ICD-10-AM coded admissions in the 42-day risk window following COVID-19 vaccinations as compared to control periods either side of the risk window. We observed associations between ChAdOx1 adenovirus vector COVID-19 vaccination and ADEM (all dose RI: 3.74 [95 %CI 1.02,13.70]) and TM (dose 1 RI: 2.49 [95 %CI: 1.07,5.79]) incident admissions. No associations were observed between mRNA COVID-19 vaccines and ADEM or TM. These findings translate to an extremely small absolute risk of ADEM (0.78 per million doses) and TM (1.82 per million doses) following vaccination; any potential risk of ADEM or TM should be weighed against the well-established protective benefits of vaccination against COVID-19 disease and its complications. This study demonstrates the value of the GVDN collaboration leveraging large population sizes to examine important vaccine safety questions regarding rare outcomes, as well as the value of linked population level datasets, such as VSHL, to rapidly explore associations that are identified.

An evaluation framework for comparing geocoding systems.

BACKGROUND: Geocoding, the process of converting textual information describing a location into one or more digital geographic representations, is a routine task performed at large organizations and government agencies across the globe. In a health context, this task is often a fundamental first step performed prior to all operations that take place in a spatially-based health study. As such, the quality of the geocoding system used within these agencies is of paramount concern to the agency (the producer) and researchers or policy-makers who wish to use these data (consumers). However, geocoding systems are continually evolving with new products coming on the market continuously. Agencies must develop and use criteria across a number axes when faced with decisions about building, buying, or maintaining any particular geocoding systems. To date, published criteria have focused on one or more aspects of geocode quality without taking a holistic view of a geocoding system's role within a large organization. The primary purpose of this study is to develop and test an evaluation framework to assist a large organization in determining which geocoding systems will meet its operational needs. METHODS: A geocoding platform evaluation framework is derived through an examination of prior literature on geocoding accuracy. The framework developed extends commonly used geocoding metrics to take into account the specific concerns of large organizations for which geocoding is a fundamental operational capability tightly-knit into its core mission of processing health data records. A case study is performed to evaluate the strengths and weaknesses of five geocoding platforms currently available in the Australian geospatial marketplace. RESULTS: The evaluation framework developed in this research is proven successful in differentiating between key capabilities of geocoding systems that are important in the context of a large organization with significant investments in geocoding resources. Results from the proposed methodology highlight important differences across all axes of geocoding system comparisons including spatial data output accuracy, reference data coverage, system flexibility, the potential for tight integration, and the need for specialized staff and/or development time and funding. Such results can empower decisions-makers within large organizations as they make decisions and investments in geocoding systems.

The effect of data cleaning on record linkage quality.

BACKGROUND: Within the field of record linkage, numerous data cleaning and standardisation techniques are employed to ensure the highest quality of links. While these facilities are common in record linkage software packages and are regularly deployed across record linkage units, little work has been published demonstrating the impact of data cleaning on linkage quality. METHODS: A range of cleaning techniques was applied to both a synthetically generated dataset and a large administrative dataset previously linked to a high standard. The effect of these changes on linkage quality was investigated using pairwise F-measure to determine quality. RESULTS: Data cleaning made little difference to the overall linkage quality, with heavy cleaning leading to a decrease in quality. Further examination showed that decreases in linkage quality were due to cleaning techniques typically reducing the variability - although correct records were now more likely to match, incorrect records were also more likely to match, and these incorrect matches outweighed the correct matches, reducing quality overall. CONCLUSIONS: Data cleaning techniques have minimal effect on linkage quality. Care should be taken during the data cleaning process.

Non-medical and non-invasive interventions for erectile dysfunction in men with type 2 diabetes mellitus: A scoping review.

Background: Erectile dysfunction (ED) often affects men with type 2 diabetes mellitus (T2DM) due to microvascular damage. However, medical interventions are not always appropriate. Aim: This scoping review aimed to answer the following question: What evidence is available about the effects of non-medical and non-invasive healthcare interventions to improve ED in men with T2DM? Method: Potential studies were collected from the Cumulative Index to Nursing and Allied Health Literature via EBSCO, Embase via Ovid, MEDLINE via Ovid, Web of Science, PubMed, ProQuest, and PsycINFO via Ovid. Findings: From 2,611 identified titles, 17 studies, including 11 interventional and 6 observational studies, were included. Four main alternatives to medical interventions were identified from the included studies. Amongst these, four studies recommended patient education on lifestyle modification, twelve studies encouraged dietary changes and physical activities, two studies emphasized the use of vacuum erectile device, and three studies suggested the application of low-intensity extracorporeal shockwave therapy by healthcare professionals. Discussion: Dietary modification and physical activities were promoted as effective interventions to help maintaining the erectile function in men with T2DM. Several methods of patient education were identified as the approach to facilitate lifestyle modification in men with T2DM-associated ED. The positive outcomes of this review support early ED screening to help preventing T2DM complications such as ED in men. Further, T2DM management is a shared responsibility between the men and healthcare professionals. Despite the success of Vacuum Erectile Device and Low-intensity Extracorporeal Shockwave Therapy in regaining erectile function, further research is needed in this area based on the recommendations of the American Urological Association. Moreover, the health and quality of life of men with T2DM must be improved.

Public preference on sharing health data to inform research, health policy and clinical practice in Australia: A stated preference experiment.

OBJECTIVE: To investigate public willingness to share sensitive health information for research, health policy and clinical practice. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Data linkage infrastructure for cross-jurisdictional health-related research in Australia.

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.

Australian general practitioner perceptions to sharing clinical data for secondary use: a mixed method approach.

OBJECTIVE: The potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioner's perceptions on sharing routinely collected data for the purposes of healthcare planning and research. It also compares findings with data sharing perceptions in an international context.  MATERIALS AND METHODS: A mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a cross sectional convenience sample of general practitioners across Western Australia (WA). RESULTS: Eighty online surveys and ten face-to-face interviews with general practitioners were conducted from November 2020 - May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy. DISCUSSION: Results indicate strong agreement around the importance of sharing patient's medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised. CONCLUSION: To further increase general practitioner's confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

Prediction models used in the progression of chronic kidney disease: A scoping review.

OBJECTIVE: To provide a review of prediction models that have been used to measure clinical or pathological progression of chronic kidney disease (CKD). DESIGN: Scoping review. DATA SOURCES: Medline, EMBASE, CINAHL and Scopus from the year 2011 to 17th February 2022. STUDY SELECTION: 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. DATA EXTRACTION: 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. RESULTS: 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. CONCLUSIONS: 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.

An Australian study of long-term hospital admissions and costs comparing patients with unintentional burns and uninjured people.

BACKGROUND: The objective of this study was to describe and quantify the long-term hospital service use (HSU) after burn injury and associated costs in a population-based cohort of patients with unintentional burns and compare with uninjured people. METHODS: This retrospective population-based cohort study analysed de-identified linked health administrative data of all unintentional burns patients (n = 10,460) between 2000 and 2012 in Western Australia and a matched uninjured comparison cohort (n = 42,856). HSU after burn injury (annual admission counts and cumulative length of stay) was examined. HSU costs were based on the Australian Refined Diagnosis Related Groups (AR-DRGs) code on each record. Generalised linear models were used to examine and quantify associations between burn injury and long-term HSU and associated costs. RESULTS: There were 48,728 hospitalisations after burn occurring within the study period in the burn cohort; in the uninjured comparison cohort, there were 53,244 post-study index hospitalisations. Of those in the burn cohort, 63.9% (n = 6828) had a further hospitalisation after burn injury; this compared with 40.4% (n = 17,297) in the uninjured cohort. After adjustment for socio-demographic and pre-existing health conditions the burn cohort had 2.48 times the hospitalisation rate compared to the uninjured cohort (95% CI: 2.33-2.65). The cost of post-index hospitalisations in the burn cohort totalled to $AUS248.3 million vs $AUS240.8 million in the uninjured cohort. After adjustment, the burn cohort had hospital costs 2.77 times higher than the uninjured controls (95% CI: 2.58-2.98). CONCLUSIONS: After adjustment for covariates, burn patients experienced greater hospital use for a prolonged period after the initial injury compared with uninjured people. The mean cost per episode of care was generally higher for members of the burn cohort compared to the uninjured cohort indicating either more complicated admissions or admissions for more expensive conditions.

Burn induced nervous system morbidity among burn and non-burn trauma patients compared with non-injured people.

OBJECTIVE: Burns cause acute damage to the peripheral nervous system with published reports identifying that neurological changes after injury remain for a prolonged period. To shed some light on potential mechanisms, we assessed injury etiology and patterns of nervous system morbidity after injury by comparing long-term hospital admissions data of burns patients and other non-burn trauma patients with uninjured people. METHODS: Linked hospital and death data of a burn patient cohort (n=30,997) in Western Australia during the period 1980-2012 were analysed along with two age and gender frequency matched comparison cohorts: non-burn trauma patients (n=28,647) and; non-injured people (n=123,399). The number of annual NS disease admissions and length of stay (LOS) were used as outcome measures. Multivariable negative binomial regression modelling was used to derive adjusted incidence rate ratios and 95% confidence intervals (IRR, 95% CI) and adjusted Cox regression models and hazard ratios (HR) were used to examine time to first nervous system admission after burn and incident admission rates. RESULTS: The most common peripheral nervous system condition identified in each cohort (burn, non-burn trauma, uninjured) were episodic and paroxysmal disorders followed by nerve root and plexus disorders and polyneuropathies/peripheral NS conditions. Significantly elevated admission rates for NS conditions (IRR, 95% CI) were found for the burn (2.20, 1.86-2.61) and non-burn trauma (1.85, 1.51-2.27), compared to uninjured. Peripheral nervous system admission rates after injury (IRR, 95% CI) were significantly higher regardless of age at time of injury for the burn (<15years: 1.97, 1.49-2.61; 15-45: 2.70, 2.016-3.55; ≥45year: 1.62, 1.33-1.97) and non-burn trauma cohorts (<15years: 1.91, 1.55-2.35; 15-45: 1.94, 1.51-2.49; ≥45year: 1.42, 1.18-1.72), when compared to the uninjured. Significantly higher rates of incident NS hospitalisations were found for the burn cohort vs. uninjured cohort for a period of 15-years after discharge (0-5 years: HR, 95% CI: 1.97, 1.75-2.22; 5-15 years; HR, 95% CI: 1.44, 1.28-1.63). The non-burn trauma cohort had significantly higher incident nervous system admissions for 10 years after discharge (0-30 days: HR, 95% CI: 4.75, 2.44-9.23; 30days to 1-year HR, 95% CI: 2.95, 2.34-3.74; 1-5 years; HR, 95% CI: 1.47, 1.26-1.70; 5-10 years; HR, 95% CI: 1.34, 1.13-1.58). CONCLUSIONS: Results suggest that injury patients are at increased risk of peripheral nervous system morbidity after discharge for a prolonged period of time. The time patterns associated with incident nervous system conditions suggest possible differences in underlying pathology and long-term patient care needs. Further research is needed to elucidate the underlying neuropathology.

Long-term mental health outcomes after unintentional burns sustained during childhood: a retrospective cohort study.

BACKGROUND: Burns are a devastating injury that can cause physical and psychological issues. Limited data exist on long-term mental health (MH) after unintentional burns sustained during childhood. This study assessed long-term MH admissions after paediatric burns. METHODS: This retrospective cohort study included all children (< 18 years) hospitalised for a first burn (n = 11,967) in Western Australia, 1980-2012, and a frequency matched uninjured comparison cohort (n = 46,548). Linked hospital, MH and death data were examined. Multivariable negative binomial regression modelling was used to generate incidence rate ratios (IRR) and 95% confidence intervals (CI). RESULTS: The burn cohort had a significantly higher adjusted rate of post-burn MH admissions compared to the uninjured cohort (IRR, 95% CI: 2.55, 2.07-3.15). Post-burn MH admission rates were twice as high for those younger than 5 years at index burn (IRR, 95% CI 2.06, 1.54-2.74), three times higher for those 5-9 years and 15-18 years (IRR, 95% CI: 3.21, 1.92-5.37 and 3.37, 2.13-5.33, respectively) and almost five times higher for those aged 10-14 (IRR, 95% CI: 4.90, 3.10-7.76), when compared with respective ages of uninjured children. The burn cohort had higher admission rates for mood and anxiety disorders (IRR, 95% CI: 2.79, 2.20-3.53), psychotic disorders (IRR, 95% CI: 2.82, 1.97-4.03) and mental and behavioural conditions relating to drug and alcohol abuse (IRR, 95% CI: 4.25, 3.39-5.32). CONCLUSIONS: Ongoing MH support is indicated for paediatric burn patients for a prolonged period after discharge to potentially prevent psychiatric morbidity and associated academic, social and psychological issues.

A population-based comparison study of the mental health of patients with intentional and unintentional burns.

BACKGROUND: A number of studies report high prevalence of mental health conditions among burn patients. However there is a need to understand differences in the temporal relationship between mental health conditions and intentional and unintentional burns to hasten psychological prevention and intervention. This study aims to compare the socio-demographic profile, burn characteristics and pre- and post-burn psychiatric morbidity of burn patients by intent-of-injury. METHODS: De-identified linked hospital, death and mental health (MH) case registry data of burn patients hospitalised in Western Australia between 1 January 1980 and 30 June 2012 were analysed. Crude (observed) post-burn rates of mental health admissions were generated by burn intent-of-injury. Descriptive statistics were performed to compare the characteristics of the burn patients. RESULTS: A total of 30,997 individuals were hospitalised for a first burn; 360 (1.2%) had self-harm burns and 206 (0.7%) assault burns. Over the study period, admission rates for assault burns increased by 4.8% per year (95% confidence interval (CI) 3.1-6.5%) and self-harm burns increased 6.9% per year (95% CI 4.8-9.1%). Self-harm and assault burns occurred mainly among those aged 15 to 44 years (median age, interquartile range (IQR): self-harm 30 years, 22-40; assault 31 years, 23-38). Those with self-harm burns had a longer index hospital stay (median (IQR): self-harm 15 days (5-35) vs 4 days (1-11) assault vs 4 days (1-10) unintentional) and higher in-hospital mortality (7.2% self-harm vs 1.9% assault burns vs 0.8% unintentional). More than half (55.0%) of self-harm burns had a prior hospitalisation (5-year lookback) for a MH condition vs 10.7% of assault burns and 2.8% of unintentional burns. Crude post-burn rates of MH admissions per 100 person-years (PY) by intent-of-burn subgroups: self-harm 209 per 100 PY, assault burns 11 per 100 PY and unintentional burns 3 per 100 PY. CONCLUSIONS: Intentional burn patients experienced significantly higher pre- and post-burn mental health morbidity along with significant adverse outcome in comparison with unintentional burns. Early psychological assessment and intervention could help in improving the MH of these patients.