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.

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.

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.

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.

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.

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.

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.

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.

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.

A retrospective cohort study to compare post-injury admissions for infectious diseases in burn patients, non-burn trauma patients and uninjured people.

BACKGROUND: Injury triggers a range of systemic effects including inflammation and immune responses. This study aimed to compare infectious disease admissions after burn and other types of injury using linked hospital admissions data. METHODS: A retrospective longitudinal study using linked health data of all patients admitted with burns in Western Australia (n = 30,997), 1980-2012, and age and gender frequency matched cohorts of people with non-burn trauma (n = 28,647) and no injury admissions (n = 123,399). Analyses included direct standardisation, negative binomial regression and Cox proportional hazards regression. RESULTS: Annual age-standardised infectious disease admission rates were highest for the burn cohort, followed by the non-burn trauma and uninjured cohorts. Age-standardised admission rates by decade showed different patterns across major categories of infectious diseases, with the lower respiratory and skin and soft tissue infections the most common for those with burns and other open trauma. Compared with the uninjured, those with burns had twice the admission rate for infectious disease after discharge (incident rate ratio (IRR), 95% confidence interval (CI): 2.04, 1.98-2.11) while non-burn trauma experienced 1.74 times higher rates (95%CI: 1.68-1.81). The burn cohort experienced 10% higher rates of first-time admissions after discharge when compared with the non-burn trauma (hazard ratio (HR), 95%CI: 1.10, 1.05-1.15). Compared with the uninjured cohort, incident admissions were highest during the first 30 days after discharge for burns (HR, 95%CI: 5.18, 4.15-6.48) and non-burn trauma (HR, 95%CI: 5.06, 4.03-6.34). While incident rates remained high over the study period, the magnitude decreased with increasing time from discharge: burn vs uninjured: HR, 95%CI: 30 days to 1 year: 1.69, 1.53-1.87; 1 to 10 years: 1.40, 1.33-1.47; 10 years to end of study period: 1.16, 1.08-1.24; non-burn trauma vs uninjured: HR, 95%CI: 30 days to 1 year: 1.71, 1.55-1.90; 1 to 10 years: 1.30, 1.24-1.37; 10 years to end of study period: 1.09, 1.03-1.17). CONCLUSIONS: Burns and non-burn trauma patients had higher admission rates for infectious diseases compared with age and gender matched uninjured people. The pattern of annual admission rates for major categories of infectious diseases varied across injury groups. Overall, the burn cohort experienced the highest rates for digestive, lower respiratory and skin and soft tissue infections. These results suggest long-term vulnerability to infectious disease after injury, possibly related to long-term immune dysfunction.

A population-based retrospective cohort study to assess the mental health of patients after a non-intentional burn compared with uninjured people.

BACKGROUND: The objective of this study was to describe and quantify mental health (MH) admissions experienced by patients with unintentional burns subsequent to their injury. METHODS: A retrospective population-based cohort study that used de-identified linked hospital, death and mental health in-patient case registry data of all burn patients hospitalised for unintentional burns (n=10,460) between 2000 and 2012 in Western Australia and an age and gender matched uninjured comparison cohort (n=42,856). Cohorts had a median age at study index of 26 years with males comprising 66% of each cohort. MH admissions for 5 years before and after the injury were examined. Negative binomial and Cox proportional hazards regressions were adjusted for socio-demographic and pre-existing health conditions and used to quantify associations between burns and MH hospitalisations. RESULTS: In the burn cohort during the 5-year post-burn period, 4% had a MH admission, 2% were admitted for self-harm, and 3% were admitted for a behavioural disorder caused by drugs/alcohol. Significantly elevated adjusted admission rates for MH conditions were observed for the burn cohort compared with the uninjured cohort (IRR, 95% CI: 4.89, 3.52-6.79). Increased MH admission rates were found for all age groups but were most pronounced in those younger than 18 years of age at time of burn (IRR, 95% CI: 6.28, 3.00-13.14), followed by those aged 18-60 (5.14, 3.59-7.35) and those over 60 years (IRR, 95% CI: 2.97, 1.38-6.39) compared to the uninjured cohort. Gender-specific analyses showed significant differences for male (IRR, 95% CI: 4.48, 3.05-6.59) and female burn patients (IRR, 95% CI: 6.00, 3.62-9.92), compared to uninjured. The burn cohort had higher adjusted first time admissions for MH conditions (HR, 95% CI: 3.55, 2.72-4.64), mood and anxiety disorders (HR, 95% CI: 3.77, 2.81-5.08), psychotic disorders (HR, 95% CI: 3.55, 1.99-6.15) and behavioural disorders related to alcohol/drugs (HR, 95% CI: 4.75, 3.09-7.28) for five years after the initial burn. CONCLUSIONS: Patients hospitalised for unintentional burns had significantly higher MH admission rates after discharge than that observed for an uninjured cohort. Ongoing mental health support is clearly indicated for many burns patients for a prolonged period after discharge.

Diabetes mellitus after injury in burn and non-burned patients: A population based retrospective cohort study.

OBJECTIVE: To compare hospitalisations for diabetes mellitus (DM) after injury experienced by burn patients, non-burn trauma patients and people with no record of injury admission, adjusting for socio-demographic, health and injury factors. METHODS: Linked hospital and death data for a burn patient cohort (n=30,997) in Western Australia during the period 1980-2012 and two age and gender frequency matched comparison cohorts: non-burn trauma patients (n=28,647); non-injured people (n=123,399). The number of DM admissions and length of stay were used as outcome measures. Multivariate negative binomial regression was used to derive adjusted incidence rate ratios and 95% confidence intervals (IRR, 95%CI) for overall post-injury DM admission rates. Multivariate Cox regression models and hazard ratios (HR) were used to examine time to first DM admission and incident admission rates after injury discharge. RESULTS: The burn cohort (IRR, 95%: 2.21, 1.80-2.72) and other non-burn trauma cohort (IRR, 95%CI: 1.63, 1.24-2.14) experienced significantly higher post-discharge admission rates for DM than non-injured people. Compared with the non-burn trauma cohort, the burn cohort experienced a higher rate of post-discharge DM admissions (IRR, 95%CI: 1.40, 1.07-1.84). First-time DM admissions were significantly higher during first 5-years after-injury for the burn cohort compared with the non-burn trauma cohort (HR, 95%CI: 2.00, 1.31-3.05) and non-injured cohort (HR, 95%CI: 1.96, 1.46-2.64); no difference was found >5years (burn vs. non-burn trauma: HR, 95%CI: 0.88, 0.70-1.12; burn vs non-injured: 95%CI: 1.08 0.82-1.41). No significant difference was found when comparing the non-burn trauma and non-injured cohorts (0-5 years: HR, 95%CI: 1.03, 0.71-1.48; >5years: HR. 95%CI: 1.11, 0.93-1.33). CONCLUSIONS: Burn and non-burn trauma patients experienced elevated rates of DM admissions after injury compared to the non-injured cohort over the duration of the study. While burn patients were at increased risk of incident DM admissions during the first 5-years after the injury this was not the case for non-burn trauma patients. Sub-group analyses showed elevated risk in both adult and pediatric patients in the burn and non-burn trauma. Detailed clinical data are required to help understand the underlying pathogenic pathways triggered by burn and non-burn trauma. This study identified treatment needs for patients after burn and non-burn trauma for a prolonged period after discharge.

Long term cardiovascular impacts after burn and non-burn trauma: A comparative population-based study.

OBJECTIVE: To compare post-injury cardiovascular disease (CVD) hospital admissions experienced by burn patients with non-burn trauma patients and people with no record of injury, adjusting for socio-demographic, health and injury factors. METHODS: Linked hospital and death data were analysed for a cohort of burn patients (n=30,997) hospitalised in Western Australia during the period 1980-2012 and age and gender frequency matched comparison cohorts (non-burn trauma: n=28,647; non-injured: n=123,399). The number and length of hospital stay for CVD admissions were used as outcome measures. Multivariate negative binomial regression was used to derive adjusted incidence rate ratios (IRR) and 95% confidence intervals (95%CI). Multivariate Cox regression models and hazard ratios (HR) were used to examine first time post-injury CVD admissions. RESULTS: The burn cohort had a higher rate of CVD (combined) admissions (IRR, 95%CI: 1.16: 1.08-1.24) and spent longer in hospital (IRR, 95%CI: 1.37, 1.13-1.66) than the non-burn trauma cohort. Both the burn cohort (IRR, 95%CI: 1.50, 1.40-1.60) and the non-burn trauma cohort (IRR, 95%CI: 1.29, 1.21-1.37) had higher adjusted rates of post-injury CVD admissions compared with the non-injured cohort. The burn cohort (HR, 95%CI: 2.27, 1.70-3.02) and non-burn trauma cohort (HR, 95%CI: 2.19, 1.66-2.87) experienced significantly elevated first time CVD admissions during the first 6 months after injury, decreasing in magnitude from 6 months to 5 years after injury (HR, 95%CI: burn vs. non-injured; 1.31, 1.16-1.48; non-burn trauma vs. non-injured; 1.16, 1.03-1.31); no significant difference in incident admission rates was found beyond 5 years (HR, 95%CI: burn vs. non-injured; 0.99, 0.92-1.07; non-burn trauma vs. non-injured; 1.00, 0.93-1.07). CONCLUSIONS: Burn and non-burn trauma patients experience elevated rates of post-injury CVD admissions for a prolonged period after the initial injury and are particularly at increased risk of incident CVD admissions during the first 5-years after the injury event. Detailed clinical data are required to help understand the underlying pathogenic pathways triggered by burn and non-burn trauma. This study identified treatment needs for injury patients, burn and non-burn, for a prolonged period after discharge.

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.

Geographic distribution of burn in an Australian setting.

OBJECTIVE: To investigate the geographic distribution and temporal trends of burn admissions in an Australian setting. METHODS: Health administrative data of all persons hospitalised for a first burn in Western Australia for the period 2000-2012 were used. Crude and standardised incident rates were generated for each region. Maps of crude rates were generated for state regions and postcode-suburbs of Perth, the capital city. Standardised incidence rates were generated for Western Australia, total and regions, and for sub-cohorts defined by age (<20years; ≥20 years), TBSA burn severity and major causes of burns (fire, scalds and contact). Negative binomial regression was used to examine temporal changes and generate incidence rate ratios (IRR) with 95% confidence intervals (CI). RESULTS: Perth had the lowest burn admission rate per population; clusters of suburbs of lower social advantage and higher immigrant settlement were identified as being at high risk. While the highest observed admission rates were found in Kimberley and Goldfields (remote) regions, after adjustment for the regional demographic structures, the Wheatbelt and Mid-West (rural) regions were found to have the highest adjusted rates of burn admissions. Significant annual declines in admission rates were found for the Kimberley, Pilbara and Goldfields (remote regions); however, stable admission rates were identified for all other regions. CONCLUSIONS: The Mid-West and Wheatbelt rural regions were found to have the highest risk of burn admissions raising concerns about farming-related injury. Safety awareness and burn prevention strategies need to be continued, with specific attention to these high risk areas, to reduce burn admissions in Western Australia.

Effects of Pediatric Burns on Gastrointestinal Diseases: A Population-Based Study.

The systemic responses triggered by burns have been shown to include effects on the gastrointestinal tract. However, it is not clear if these changes lead to long-term gastrointestinal morbidity in patients with burns. The aim of this study was to assess if pediatric burns are associated with increased hospital use for gastrointestinal diseases after discharge for the initial injury. A population-based longitudinal study was performed using linked hospital and death data from Western Australia for children younger than 15 years when hospitalized for a first burn injury (n = 10,436) between 1980 and 2012, along with a frequency-matched noninjury comparison cohort, randomly selected from Western Australia's birth registrations (n = 40,819). Crude admission rates and cumulative length of stay for digestive diseases were calculated. Negative binomial and Cox proportional hazards regression modeling were used to generate incidence rate ratios (IRRs) and hazard ratios, respectively. After discharge, the pediatric burn cohort experienced twice the rate of gastrointestinal disease admissions (IRR, 95% confidence interval [CI]: 2.03, 1.56-2.65), spent over twice as long in hospital (IRR, 95% CI: 2.23, 1.67-2.98), and had a higher rate of first-time or incident gastrointestinal disease admissions (hazard ratio, 95% CI: 1.18, 1.08-1.29) when compared with the uninjured cohort, after adjusting for demographic and preexisting health factors. Children who experience a burn injury hospitalization are at increased risk of postburn hospital service use for gastrointestinal diseases when compared with uninjured children.

Ensuring Privacy When Integrating Patient-Based Datasets: New Methods and Developments in Record Linkage.

In an era where the volume of structured and unstructured digital data has exploded, there has been an enormous growth in the creation of data about individuals that can be used for understanding and treating disease. Joining these records together at an individual level provides a complete picture of a patient's interaction with health services and allows better assessment of patient outcomes and effectiveness of treatment and services. Record linkage techniques provide an efficient and cost-effective method to bring individual records together as patient profiles. These linkage procedures bring their own challenges, especially relating to the protection of privacy. The development and implementation of record linkage systems that do not require the release of personal information can reduce the risks associated with record linkage and overcome legal barriers to data sharing. Current conceptual and experimental privacy-preserving record linkage (PPRL) models show promise in addressing data integration challenges. Enhancing and operationalizing PPRL protocols can help address the dilemma faced by some custodians between using data to improve quality of life and dealing with the ethical, legal, and administrative issues associated with protecting an individual's privacy. These methods can reduce the risk to privacy, as they do not require personally identifying information to be shared. PPRL methods can improve the delivery of record linkage services to the health and broader research community.