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OBJECTIVES: Programmes to address chronic disease are a focus of governments worldwide. Despite growth in implementation science , there is a paucity of knowledge regarding the best means to measure sustainability. The aim of this review was to summarise current practice for measuring sustainability outcomes of chronic disease health programmes, providing guidance for programme planners and future directions for the academic field. SETTINGS: A scoping review of the literature spanning 1985-2015 was conducted using MEDLINE, CINAHL, PsychINFO and The Cochrane Library limited to English language and adults. Main search terms included chronic disease, acute care, sustainability, institutionalisation and health planning. A descriptive synthesis was required. Settings included primary care, hospitals, mental health centres and community health. PARTICIPANTS: Programmes included preventing or managing chronic conditions including diabetes, heart disease, depression, respiratory disease, cancer, obesity, dental hygiene and multiple chronic diseases. PRIMARY AND SECONDARY OUTCOME MEASURES: Outcome measures included clarifying a sustainability definition, types of methodologies used, timelines for assessment, criteria levels to determine outcomes and how methodology varies between intervention types. RESULTS: Among 153 abstracts retrieved, 87 were retained for full article review and 42 included in the qualitative synthesis. Five definitions for sustainability outcome were identified with maintenance of programme activities most frequent. Achieving sustainability was dependent on inter-relationships between various organisational and social contexts supporting a broad scale approach to evaluation. An increasing trend in use of mixed methods designs over multiple time points to determine sustainability outcomes was found. CONCLUSIONS: Despite the importance and investment in chronic disease programmes, few studies are undertaken to measure sustainability. Methods to evaluate sustainability are diverse with some emerging ...

IntroductionThe global burden of chronic diseases is large and increasing. In response, governments are investing substantial funds in innovative models of primary care, characterised by multidisciplinary care and self-management support for people with chronic conditions. Currently, large scale population-based evaluations of the effectiveness of these policies are lacking.
Objectives and ApproachWe aim to evaluate the effectiveness and cost-effectiveness of enhanced primary care policies for chronic diseases funded through Medicare Australia using stroke as a case study. Person-level linkages from the following will be used: Australian Stroke Clinical Registry (AuSCR) to define the cohort; Australian government-held Medicare claims data to identify receipt or not of enhanced primary care items; state government-held hospital data to define outcomes; and Australian government-held pharmaceutical and aged care claims data to define covariates. In Australia, unique identifiers are not used therefore, personal-identifiers will be submitted to data linkage units and content records merged using a Project-ID.
ResultsIdentifiers from ~25,000 AuSCR registrants (2012-2016), from Victoria and Queensland will be submitted for linkage. The index event is the first event recorded in the AuSCR. Data applications to state health departments and the Australian Institute of Health and Welfare have commenced. To obtain detailed information on patient's primary care experience 1,500 randomly selected AuSCR registrants are being sent surveys. Multivariable analyses using a competing risks Poisson regression model for multiple events and adjusted by a propensity score, will be used to test for differences in the rates of hospital presentations. We have power (a >0.05) to detect a ≥6% difference in the number of hospital contacts between those who did and did not receive enhanced primary care. An economic evaluation will also be undertaken.
Conclusion/ImplicationsThis is the largest stroke data linkage study in Australia. The breadth of data will provide a comprehensive evaluation of the effectiveness of enhanced primary care policies within "real world" healthcare provision. Methods will advance the use of population data linkage in healthcare evaluation where unique identifiers are unavailable.

Background: Hospital costs for stroke are increasing and variability in care quality creates inefficiencies. In 2007, the Victorian Government (Australia) employed clinical facilitators for three years in eight public hospitals to improve stroke care. Literature on the cost implications of such roles is rare. We report changes in the costs of acute stroke care following implementation of this program. Methods: Observational controlled before-and-after cohort design. Standardised hospital costing data were compared pre-program (financial year 2006-07) and post-program (2010-11) for all admitted episodes of stroke or transient ischaemic attack (TIA) using ICD-10 discharge codes. Costs in Australian dollars (AUD) were adjusted to a common year 2010. Generalised linear regression models were used for adjusted comparisons. Results: A 20% increase in stroke and TIA episodes was observed: 2624 pre-program (age > 75 years: 53%) and 3142 post-program (age > 75 years: 51%); largely explained by more TIA admissions (up from 785 to 1072). Average length of stay reduced by 22% (pre-program 7.3 days to post-program 5.7 days, p < 0.001). Six hospitals provided cost data. Average per-episode costs decreased by 10% (pre-program AUD7888 to post-program AUD7115). After adjusting for age, sex, stroke type, and hospital, average per-episode costs decreased by 6.1% from pre to post program (p = 0.025). When length of stay was additionally adjusted for, these costs increased by 10.8%, indicating a greater mean cost per day (p < 0.001). Conclusion: Cost containment of acute inpatient episodes was observed after the implementation of stroke clinical facilitators, likely associated with the shorter lengths of stay.

BackgroundHospital costs for stroke are increasing and variability in care quality creates inefficiencies. In 2007, the Victorian Government (Australia) employed clinical facilitators for three years in eight public hospitals to improve stroke care. Literature on the cost implications of such roles is rare. We report changes in the costs of acute stroke care following implementation of this program.MethodsObservational controlled before-and-after cohort design. Standardised hospital costing data were compared pre-program (financial year 2006-07) and post-program (2010-11) for all admitted episodes of stroke or transient ischaemic attack (TIA) using ICD-10 discharge codes. Costs in Australian dollars (AUD) were adjusted to a common year 2010. Generalised linear regression models were used for adjusted comparisons.ResultsA 20% increase in stroke and TIA episodes was observed: 2624 pre-program (age>75years: 53%) and 3142 post-program (age>75years: 51%); largely explained by more TIA admissions (up from 785 to 1072). Average length of stay reduced by 22% (pre-program 7.3days to post-program 5.7days, p ; Peer reviewed

IntroductionImprovement in access to reperfusion therapy and reductions in treatment delays requires coordination of multiple systems and services including a well-organised and streamlined pre-hospital care system.
Objectives and ApproachOur objective is to examine pre-hospital and hospital factors that influence long-term outcomes in patients with stroke. We linked and merged patient-level data from the Australian Stroke Clinical Registry (AuSCR) to Ambulance Victoria (AV), hospital administrative datasets (Victorian Admitted Episodes Data; VAED) and emergency department data (Victorian Emergency Minimum Dataset; VEMD) using probabilistic, iterative methods. Logistic regression models were used to determine clinical factors associated with access to evidence-based treatments.
Results7,373 episodes in the AuSCR were available for linkage, of which 4,569 (62%) were matched with AV records (58% male, median age 72 years). Of these 4,569 matched records, 4,159 (58% male, median age 73 years) had a record in the VAED or VEMD. Stroke or transient ischaemic attack was suspected for 68% of patients by paramedics based on the AV data. Highest transport priority was used for 64% of patients. Patients suspected of stroke by paramedics were more likely to be treated in stroke unit (unadjusted odds ratio, 1.72; 1.47, 2.01) and more likely to receive thrombolysis if ischaemic stroke (unadjusted odd ratio: 4.64, 3.47, 6.20).
Conclusion/ImplicationsLinkage of these administrative data with the AuSCR provide the opportunity to interrogate a range of questions to inform policy and practice of acute stroke care. Future analyses will investigate patient (such as comorbidities), clinical and system factors that influence provision of evidence-based care for patients with stroke and whether these influence outcomes at 6 months after stroke.

Introduction Approaches to economic evaluations of stroke therapies are varied and inconsistently described. An objective of the European Stroke Organisation (ESO) Health Economics Working Group is to standardise and improve the economic evaluations of interventions for stroke. Methods The ESO Health Economics Working Group and additional experts were contacted to develop a protocol and a guidance document for data collection for economic evaluations of stroke therapies. A modified Delphi approach, including a survey and consensus processes, was used to agree on content. We also asked the participants about resources that could be shared to improve economic evaluations of interventions for stroke. Results Of 28 experts invited, 16 (57%) completed the initial survey, with representation from universities, government, and industry. More than half of the survey respondents endorsed 13 specific items to include in a standard resource use questionnaire. Preferred functional/quality of life outcome measures to use for economic evaluations were the modified Rankin Scale (14 respondents, 88%) and the EQ-5D instrument (11 respondents, 69%). Of the 12 respondents who had access to data used in economic evaluations, 10 (83%) indicated a willingness to share data. A protocol template and a guidance document for data collection were developed and are presented in this article. Conclusion The protocol template and guidance document for data collection will support a more standardised and transparent approach for economic evaluations of stroke care. ; Peer reviewed

Background Historically, national programs for collecting stroke data in Australia required the use of multiple online tools. Clinicians were required to enter overlapping variables for the same patient in the different databases. From 2013 to 2016, the Australian Stroke Data Tool (AuSDaT) was built as an integrated data management solution. Objective In this article, we have described the development, implementation, and evaluation phases of establishing the AuSDaT. Method In the development phase, a governance structure with representatives from different data collection programs was established. Harmonisation of data variables, drawn from six programs used in hospitals for monitoring stroke care, was facilitated through creating a National Stroke Data Dictionary. The implementation phase involved a staged deployment for two national programs over 12 months. The evaluation included an online survey of people who had used the AuSDaT between March 2018 and May 2018. Results By July 2016, data entered for an individual patient was, for the first time, shared between national programs. Overall, 119/422 users (90% female, 61% aged 30–49 years, 57% nurses) completed the online evaluation survey. The two most positive features reported about the AuSDaT were (i) accessibility of the system (including simultaneous user access), and (ii) the ability to download reports to benchmark local data against peer hospitals or national performance. More than three quarters of respondents ( n = 92, 77%) reported overall satisfaction with the data collection tool. Conclusion The AuSDaT reduces duplication and enables users from different national programs for stroke to enter standardised data into a single system. Implications This example may assist others who seek to establish a harmonised data management solution for different disease areas where multiple programs of data collection exist. The importance of undertaking continuous evaluation of end-users to identify preferences and aspects of the tool that are not meeting current requirements were illustrated. We also highlighted the opportunities to increase interoperability, utility, and facilitate the exchange of accurate and meaningful data.

IntroductionRecent advances in Australia mean that it is possible to link national clinical registries with government held administrative datasets. However, formal evaluations of such activities and the potential impact for research are lacking.
Objectives and ApproachWe aimed to assess the feasibility and accuracy of linking registrants from the Australian Stroke Clinical Registry (AuSCR) with the Medicare enrolment file. Following data custodian and ethics approvals, personal linkage identifiers were submitted to the Australian Institute of Health and Welfare (AIHW). De-identified data from AuSCR and the AIHW were submitted into the Secure Unified Research Environment and merged using project specific person-based IDs. We calculated the proportion of patients linked with the Medicare enrolment file that were present in the associated Medicare and medication dispensing datasets and the proportion with claims after their date of death. Logistic regression was used to identify factors associated with a non-merged patient.
Results17,980 AuSCR registrants (January 2010-July 2014) were submitted for linkage (median age 76 years; 46% female; 67% ischaemic stroke; 16% TIA). Of these, 93% were merged with Medicare (N=16,648) and 95% with subsidised medication dispensing claims data (N=17,079). In those who died, 127 (0.8%) had one or more Medicare claim and 411 (2.4%) had one or more medications dispensed after their death date. Asian born registrants were less likely to be merged with Medicare (adjusted Odds Ratio [aOR]: 0.54; 95% Confidence Interval [CI]: 0.40, 0.72) than Australian born registrants. Those aged ≥85 years were less likely to be merged with Medicare data than those aged <65 years (aOR 0.24; 95% CI: 0.19, 0.29) but were more likely to be merged with dispensing data (aOR: 2.22 (95% CI: 1.73, 2.84).
Conclusion/ImplicationsLinkage between a national clinical quality registry and the Medicare spine is feasible. These linkages will provide novel insights into post-stroke care.

IntroductionDespite being recommended in clinical guidelines for secondary prevention of stroke, there are limited real-world data on outcomes associated with use of statins post-stroke.
Objectives and ApproachWe aimed to investigate the association between statin use and cardiovascular mortality post-stroke. We conducted a retrospective cohort study using prospectively collected data from the Australian Stroke Clinical Registry (2010-2014), linked with national medication dispensing and mortality data. We observed adult patients with first-ever ischaemic stroke or transient ischaemic attack (TIA) for 1-year following hospital discharge, or until their date of death, whichever occurred first. Statin use, defined as having an available statin dispensing, was assessed daily and treated as a time-varying exposure to account for patients who discontinued or reinitiated statins during follow-up. Multivariable, competing-risks regression, with non-cardiovascular death as the competing risk, was used to investigate the association between statin use and 1-year cardiovascular mortality.
ResultsAmong 8363 patients discharged following first-ever ischaemic stroke or TIA (48% aged ≥75 years, 45% female, 20% TIA, median length-of-stay 5 days), 945 died within 1 year, with 763 deaths being cardiovascular-related. The proportion of statin users was 65% at 90 days, 64% at 180 days, and 62% at 1 year. Groups least likely to be statin users at 1-year were women (odds ratio [OR]: 0.75; 95% CI: 0.67-0.85), patients aged <65 years (OR: 0.80; 95% CI: 0.69-0.92), and those discharged directly home (OR: 0.77; 95% CI: 0.67-0.88). Compared to non-use, use of statins was associated with a reduced risk of cardiovascular mortality within 1 year overall (sub-distribution hazard ratio [SHR]: 0.40; 95% CI: 0.34-0.46), and in sub-groups of patients with TIA, severe stroke, and advanced age.
Conclusion / Implications:Our preliminary data provide evidence of survival benefits associated with post-stroke statin use. Interventions to improve medication adherence may assist in reducing post-stroke mortality.

IntroductionThe growing burden of chronic diseases means some governments have been providing financial incentives for multidisciplinary care and self-management support delivered within primary care. Currently, population-based evaluations of the effectiveness of these policies are lacking.
AimTo outline the methodological approach for our study that is designed to evaluate the effectiveness (including cost) of primary care policies for chronic diseases in Australia using stroke as a case study.
MethodsPerson-level linkages will be undertaken between registrants from the Australian Stroke Clinical Registry (AuSCR) and (i) Government-held Medicare Australia claims data, to identify receipt or not of chronic disease management and care coordination primary care items; (ii) state government-held hospital data, to define outcomes; and (iii) government-held pharmaceutical and aged care claims data, to define covariates. N=1500 randomly selected AuSCR registrants will be sent surveys to obtain patient experience information. In Australia, unique identifiers are unavailable. Therefore, personal-identifiers will be submitted to government data linkage units. Researchers will merge the de-identified datasets for analysis using a project identifier. An economic evaluation will also be undertaken.
AnalysisThe index event will be the first stroke recorded in the AuSCR. Multivariable competing risks Poisson regression for multiple events, adjusted by a propensity score, will be used to test for differences in the rates of hospital presentations and medication adherence for different care (policy) types. Our estimated sample size of 25,000 patients will provide 80% estimated power (α >0.05) to detect a 6-8% difference in rates. The incremental costs per Quality-adjusted life years gained of community-based care following the acute event will be estimated from a health sector perspective.
ConclusionCompletion of this study will provide a novel and comprehensive evaluation of the effectiveness and cost-effectiveness of Australian primary care policies. Its success will enable us to highlight the value of data-linkage for this type of research.

Objective: In Australia, approximately 3 in 4 people with acute stroke use an ambulance. Few examples of merging ambulance clinical records, hospital government data, and national registry data for stroke exist. We sought to understand the advantages of using linked datasets for describing the full clinical journey of people with stroke and the possibility of investigating their long-term outcomes based on pre-hospital management of stroke. Method: Patient-level data from the Australian Stroke Clinical Registry (AuSCR) (January 2013-October 2017) were linked with Ambulance Victoria (AV) records and Victorian Emergency Minimum Dataset (VEMD). Probabilistic iterative matching on personal identifiers were used and records merged with a project specific identification number. Results: Of the 7,373 episodes in the AuSCR and 6,001 in the AV dataset; 4,569 (62%) were matched. Unmatched records that were positive for "arrival by ambulance" in the AuSCR and VEMD (no corresponding record in AV) were submitted to AV. AV were able to identify 148/435 additional records related to these episodes. The final cohort included 4,717 records (median age: 73 years, female 42%, ischemic stroke 66%). Conclusion: The results of the data linkage provides greater confidence for use of these data for future research related to pre-hospital management of stroke.

Background Stroke is a high-cost condition. Detailed patient-level assessments of the costs of care received and outcomes achieved provide useful information for organisation and optimisation of the health system. Objectives To describe the costs of hospital care for stroke and transient ischaemic attack (TIA) and investigate factors associated with costs. Methods Retrospective cohort study using data from the Australian Stroke Clinical Registry (AuSCR) collected between 2009 and 2013 linked to hospital administrative data and clinical costing data in Queensland. Clinical costing data include standardised assignment of costs from hospitals that contribute to the National Hospital Costing programme. Patient-level costs for each hospital admission were described according to the demographic, clinical and treatment characteristics of patients. Multivariable median regression with clustering by hospital was used to determine factors associated with greater costs. Results Among 22 hospitals, clinical costing data were available for 3909 of 5522 patient admissions in the AuSCR (71%). Compared to those without clinical costing data, patients with clinical costing data were more often aged <65 years (30% with cost data vs 24% without cost data, p < 0.001) and male (56% with cost data vs 49% without cost data, p < 0.001). Median cost of an acute episode was $7945 (interquartile range $4176 to $14970) and the median length of stay was 5 days (interquartile range 2 to 10 days). The most expensive cost buckets were related to medical ( n = 3897, median cost $1577), nursing ( n = 3908, median cost $2478) and critical care ( n = 434, median cost $3064). Factors associated with greater total costs were a diagnosis of intracerebral haemorrhage, greater socioeconomic position, in-hospital stroke and prior history of stroke. Conclusion Medical and nursing costs were incurred by most patients admitted with stroke or TIA, and were relatively more expensive on average than other cost buckets such as imaging and allied health. Implications Scaling this data linkage to national data collections may provide valuable insights into activity-based funding at public hospitals. Regular report of these costs should be encouraged to optimise economic evaluations.

The incidence of stroke in India is one of the largest worldwide. With this scoping review, we assessed the evidence on the costs of stroke, which is essential to evaluate whether stroke care interventions are cost-effective. We adopted a healthcare sector and broader societal perspective and searched electronic databases for records including stroke cost estimates (up to 2020). Following deduplication and screening of 2,510 records, we extracted the data (converted into 2020 Indian rupees [INR]) and assessed the quality of eight eligible studies. These studies, published between 2011 and 2020, covered the whole of India and specific localities and were: cost-of-illness studies (n = 3); economic evaluations (n = 2); cross-sectional costing study (n = 1); simulated costing study (n = 1); and policy/clinical review (n = 1). Among the extracted estimates, the mean total costs of stroke care per patient for the period up to six months post admission ranged from ₹19,428.86 in a government hospital in Punjab to ₹118,040.15 in a private tertiary care centre in Ludhiana. The median total out-of-pocket (OOP) payments for cardiovascular disease-related expenditures ranged from ₹18,148.88 to ₹68,464.39 across different income groups. Despite methodological limitations, the data from our scoping review will help in designing economic evaluations of stroke care interventions in India.JEL Codes: C18, C80, D61, I15, I19

ObjectivesData linkage can provide sufficient breadth and size of data, to draw reliable estimates of effectiveness, at a population level using real-world data. We compared differences in survival and hospital presentations following stroke or transient ischaemic attack (TIA), based on whether a Medicare funded chronic disease management plan was claimed.
ApproachA population-based, comparative effectiveness study of Victorian and Queensland Australian Stroke Clinical Registrants (January 2012-June 2015), using the emulated target trial approach, was performed. Chronic disease management items were identified from Medicare claims in the 6-18 months post-stroke (exposure period). Data on covariates for model adjustment were obtained from hospital, pharmacy and aged care datasets. Outcomes at 19-30 months post-stroke were determined using the national death registry and state hospital data. Cox regression, adjusted using propensity score methods with inverse probability treatment weights was used to determine the effect of receipt of chronic disease management claims on outcomes.
ResultsOf 28,775 AuSCR registrants, 27,435 (95.3%) were linked across the Medicare, pharmacy and hospital datasets. Following exclusions, 11,574 registrants from 42 hospitals (42% female, median age 70 years, 27% TIA) were eligible for the study. Overall, 45% of participants received chronic disease management during the exposure period. After propensity score weighting, there was excellent balance between groups across 35 baseline variables (standardised differences <0.1). Receipt of chronic disease management (vs non-receipt) was associated with a 30% reduced hazard of death (adjusted Hazard Ratio [aHR]: 0.70, 95%CI: 0.57, 0.87) but a 17% increase in hospital presentations (aHR: 1.17, 95%CI: 1.12, 1.23). Variation was observed between planned (aHR: 1.21, 95%CI: 1.10, 1.33) and unplanned (aHR: 1.15, 95%CI: 1.07, 1.23) presentations.
ConclusionWe provide an evaluation of the effectiveness of Medicare funded chronic disease management within "real world" healthcare provision, thereby demonstrating the value of linked population data in health services research. Further work is underway to examine causal mechanisms.

IntroductionTo prevent further vascular events, prescribing of multiple classes of medications (antihypertensive, antithrombotic and lipid-lowering) is recommended in national clinical guidelines following ischaemic stroke.
Objectives and ApproachUsing real-world data, we determined the association between optimal combination pharmacotherapy (supply of all three classes, "optimal pharmacotherapy") and survival after stroke. We linked a cohort of patients with first-ever ischaemic stroke from the Australian Stroke Clinical Registry (2010-2014) with national pharmaceutical dispensing and national mortality data. Cox regression was used to determine associations between pharmacotherapy in the first 30 days of stroke with 1-year (from day 31 to 395) all-cause mortality. All analyses were adjusted for socio-demographic (age, sex) and clinical characteristics (stroke severity, discharge destination).
ResultsAmong 6684 patients discharged following first-ever ischaemic stroke (median length-of-stay 5 days), 6466 patients who survived to 30 days were included (44% female, median age 74 years). During the first 30 days from discharge, 71.4% received ≥1 medication class, and 32.9% (n=2125) received optimal pharmacotherapy. Patients with optimal pharmacotherapy were older (≥75 years 50.3% vs <75 years 44.5%; p<0.001), discharged directly home (home 58.5% vs other 40.3%; p<0.001) and experienced a less severe stroke (able to walk on admission 46.9% vs 36.4%; p<0.001), than those without optimal pharmacotherapy. Between day 31 and 395, there were 667 deaths; 530 related to cardiovascular disease. Compared to no medication, treatment with two medications was associated with a 42% lower risk of death (hazard ratio [HR]: 0.58; 95%CI: 0.45-0.73); and optimal pharmacotherapy had a 62% lower risk of death (HR: 0.38; 95% CI: 0.31-0.47). Survival was similar between those with one or no medication.
Conclusion / ImplicationsPatients with ischaemic stroke who received optimal pharmacotherapy within 30-days of admission had greater one-year-survival. Further research is required to understand reasons for sub-optimal pharmacotherapy in these patients.