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Abstract Background Stroke affects long-term physical and cognitive function; many survivors report unmet health needs, such as pain or depression. A hospital-led follow-up service designed to address ongoing health problems may avoid unplanned readmissions and improve quality of life. Methods This paper outlines the protocol for a registry-based, randomised controlled trial with allocation concealment of participants and outcome assessors. Based on an intention-to-treat analysis, we will evaluate the feasibility, acceptability, potential effectiveness and cost implications of a new tailored, codesigned, hospital-led follow-up service for people within 6–12 months of stroke. Participants (n = 100) from the Australian Stroke Clinical Registry who report extreme health problems on the EuroQol EQ-5D-3L survey between 90 and 180 days after stroke will be randomly assigned (1:1) to intervention (follow-up service) or control (usual care) groups. All participants will be independently assessed at baseline and 12–14-week post-randomisation. Primary outcomes for feasibility are the proportion of participants completing the trial and for intervention participants the proportion that received follow-up services. Acceptability is satisfaction of clinicians and participants involved in the intervention. Secondary outcomes include effectiveness: change in extreme health problems (EQ-5D-3L), unmet needs (Longer-term Unmet Needs questionnaire), unplanned presentations and hospital readmission, functional independence (modified Rankin Scale) and cost implications estimated from self-reported health service utilisation and productivity (e.g. workforce participation). To inform future research or implementation, the design contains a process evaluation including clinical protocol fidelity and an economic evaluation. Discussion The results of this study will provide improved knowledge of service design and implementation barriers and facilitators and associated costs and resource implications to inform a future fully powered effectiveness trial of the intervention. Trial registration ACTRN12622001015730pr. Trial sponsor Florey Institute of Neuroscience and Mental Health, 245 Burgundy Street, Heidelberg, VIC, 3084, PH: +61 3 9035 7032

Background: The Quality in Acute Stroke Care (QASC) Trial demonstrated that assistance to implement protocols to manage Fever, hyperglycaemia (Sugar) and Swallowing (FeSS) post-stroke reduced death and disability. In 2017, a ‘Strong Recommendation’ for use of FeSS Protocols was included in the Australian Clinical Guidelines for Stroke Management. We aimed to: i) compare adherence to FeSS Protocols pre- and post-guideline inclusion; ii) determine if adherence varied with prior participation in a treatment arm of a FeSS Intervention study, or receiving treatment in a stroke unit; and compare findings with our previous studies. Methods: Pre-test post-test study using Australian acute stroke service audit data comparing 2015/2017 (pre-guideline) versus 2019/2021 (post-guideline) adherence. Primary outcome was adherence to all six FeSS indicators (composite), with mixed-effects logistic regression adjusting for age, sex, stroke type and severity (ability to walk on admission), stroke unit care, hospital prior participation in a FeSS Intervention study, and correlation of outcomes within hospital. Additional analysis examined interaction effects. Results: Overall, 112 hospitals contributed data to ≥1 one Audit cycle for both periods (pre=7011, post=7195 cases); 42 hospitals had participated in any treatment arm of a FeSS Intervention study. Adherence to FeSS Protocols post-guideline increased (pre: composite measure 35% vs post: composite measure 40 %, aOR:1.2 95 %CI: 1.2, 1.3). Prior participation in a FeSS Intervention study (aOR:1.6, 95 %CI: 1.2, 2.0) and stroke unit care (aOR 2.3, 95 %CI: 2.0, 2.5) were independently associated with greater adherence to FeSS Protocols. There was no change in adherence over time based on prior participation in a FeSS Intervention study (p = 0.93 interaction), or stroke unit care (p = 0.07 interaction). Conclusions: There is evidence of improved adherence to FeSS Protocols following a ‘strong recommendation’ for their use in the Australian stroke guidelines. Change in adherence was similar independent of hospital prior participation in a FeSS Intervention study, or stroke unit care. However, maintenance of higher pre-guideline adherence for hospitals prior participation in a FeSS Intervention study suggests that research participation can facilitate greater guideline adherence; and confirms superior care received in stroke units. Nevertheless, less than half of Australian patients are being cared for according to the FeSS Protocols, providing impetus for additional strategies to increase uptake.

ABSTRACT Background Currently, there are no agreed quality standards for post‐stroke aphasia services. Therefore, it is unknown if care reflects best practices or meets the expectations of people living with aphasia. We aimed to (1) shortlist, (2) operationalise and (3) prioritise best practice recommendations for post‐stroke aphasia care. Methods Three phases of research were conducted. In Phase 1, recommendations with strong evidence and/or known to be important to people with lived experience of aphasia were identified. People with lived experience and health professionals rated the importance of each recommendation through a two‐round e‐Delphi exercise. Recommendations were then ranked for importance and feasibility and analysed using a graph theory–based voting system. In Phase 2, shortlisted recommendations from Phase 1 were converted into quality indicators for appraisal and voting in consensus meetings. In Phase 3, priorities for implementation were established by people with lived experience and health professionals following discussion and anonymous voting. Findings In Phase 1, 23 best practice recommendations were identified and rated by people with lived experience (n = 26) and health professionals (n = 81). Ten recommendations were shortlisted. In Phase 2, people with lived experience (n = 4) and health professionals (n = 17) reached a consensus on 11 quality indicators, relating to assessment (n = 2), information provision (n = 3), communication partner training (n = 3), goal setting (n = 1), person and family‐centred care (n = 1) and provision of treatment (n = 1). In Phase 3, people with lived experience (n = 5) and health professionals (n = 7) identified three implementation priorities: assessment of aphasia, provision of aphasia‐friendly information and provision of therapy. Interpretation Our 11 quality indicators and 3 implementation priorities are the first step to enabling systematic, efficient and person‐centred measurement and quality improvement in post‐stroke aphasia services. Quality indicators will be embedded in routine data collection systems, and strategies will be developed to address implementation priorities. Patient and Public Contribution Protocol development was informed by our previous research, which explored the perspectives of 23 people living with aphasia about best practice aphasia services. Individuals with lived experience of aphasia participated as expert panel members in our three consensus meetings. We received support from consumer advisory networks associated with the Centre for Research Excellence in Aphasia Rehabilitation and Recovery and the Queensland Aphasia Research Centre.

Abstract Background In the context of expanding digital health tools, the health system is ready for Learning Health System (LHS) models. These models, with proper governance and stakeholder engagement, enable the integration of digital infrastructure to provide feedback to all relevant parties including clinicians and consumers on performance against best practice standards, as well as fostering innovation and aligning healthcare with patient needs. The LHS literature primarily includes opinion or consensus-based frameworks and lacks validation or evidence of benefit. Our aim was to outline a rigorously codesigned, evidence-based LHS framework and present a national case study of an LHS-aligned national stroke program that has delivered clinical benefit. Main text Current core components of a LHS involve capturing evidence from communities and stakeholders (quadrant 1), integrating evidence from research findings (quadrant 2), leveraging evidence from data and practice (quadrant 3), and generating evidence from implementation (quadrant 4) for iterative system-level improvement. The Australian Stroke program was selected as the case study as it provides an exemplar of how an iterative LHS works in practice at a national level encompassing and integrating evidence from all four LHS quadrants. Using this case study, we demonstrate how to apply evidence-based processes to healthcare improvement and embed real-world research for optimising healthcare improvement. We emphasize the transition from research as an endpoint, to research as an enabler and a solution for impact in healthcare improvement. Conclusions The Australian Stroke program has nationally improved stroke care since 2007, showcasing the value of integrated LHS-aligned approaches for tangible impact on outcomes. This LHS case study is a practical example for other health conditions and settings to follow suit.

Abstract Background Unplanned hospital presentations may occur post-stroke due to inadequate preparation for transitioning from hospital to home. The Recovery-focused Community support to Avoid readmissions and improve Participation after Stroke (ReCAPS) trial was designed to test the effectiveness of receiving a 12-week, self-management intervention, comprising personalised goal setting with a clinician and aligned educational/motivational electronic messages. Primary outcome is as follows: self-reported unplanned hospital presentations (emergency department/admission) within 90-day post-randomisation. We present the statistical analysis plan for this trial. Methods/design Participants are randomised 1:1 in variable block sizes, with stratification balancing by age and level of baseline disability. The sample size was 890 participants, calculated to detect a 10% absolute reduction in the proportion of participants reporting unplanned hospital presentations/admissions, with 80% power and 5% significance level (two sided). Recruitment will end in December 2023 when funding is expended, and the sample size achieved will be used. Logistic regression, adjusted for the stratification variables, will be used to determine the effectiveness of the intervention on the primary outcome. Secondary outcomes will be evaluated using appropriate regression models. The primary outcome analysis will be based on intention to treat. A p-value ≤ 0.05 will indicate statistical significance. An independent Data Safety and Monitoring Committee has routinely reviewed the progress and safety of the trial. Conclusions This statistical analysis plan ensures transparency in reporting the trial outcomes. ReCAPS trial will provide novel evidence on the effectiveness of a digital health support package post-stroke. Trial registration ClinicalTrials.gov ACTRN12618001468213. Registered on August 31, 2018. SAP version 1.13 (October 12 2023) Protocol version 1.12 (October 12, 2022) SAP revisions Nil

Introduction People with aphasia following stroke experience disproportionally poor outcomes, yet there is no comprehensive approach to measuring the quality of aphasia services. The Meaningful Evaluation of Aphasia SeRvicES (MEASuRES) minimum dataset was developed in partnership with people with lived experience of aphasia, clinicians and researchers to address this gap. It comprises sociodemographic characteristics, quality indicators, treatment descriptors and outcome measurement instruments. We present a protocol to pilot the MEASuRES minimum dataset in clinical practice, describe the factors that hinder or support implementation and determine meaningful thresholds of clinical change for core outcome measurement instruments.Methods and analysis This research aims to deliver a comprehensive quality assessment toolkit for poststroke aphasia services in four studies. A multicentre pilot study (study 1) will test the administration of the MEASuRES minimum dataset within five Australian health services. An embedded mixed-methods process evaluation (study 2) will evaluate the performance of the minimum dataset and explore its clinical applicability. A consensus study (study 3) will establish consumer-informed thresholds of meaningful change on core aphasia outcome constructs, which will then be used to establish minimal important change values for corresponding core outcome measurement instruments (study 4).Ethics and dissemination Studies 1 and 2 have been registered with the Australian and New Zealand Clinical Trial Registry (ACTRN12623001313628). Ethics approval has been obtained from the Royal Brisbane and Women’s Hospital (HREC/2023/MNHB/95293) and The University of Queensland (2022/HE001946 and 2023/HE001175). Study findings will be disseminated through peer-reviewed publications, conference presentations and engagement with relevant stakeholders including healthcare providers, policy-makers, stroke and rehabilitation audit and clinical quality registry custodians, consumer support organisations, and individuals with aphasia and their families.

BackgroundUsing government health datasets for secondary purposes is widespread; however, little is known on researchers' knowledge and reuse practices within Australia.ObjectivesTo explore researchers' knowledge and experience of governance processes, and their data reuse practices, when using Victorian government health datasets for research between 2008-2020.MethodA cross-sectional quantitative survey was conducted with authors who utilised selected Victorian, Australia, government health datasets for peer-reviewed research published between 2008-2020. Information was collected on researchers': data reuse practices; knowledge of government health information assets; perceptions of data trustworthiness for reuse; and demographic characteristics.ResultsWhen researchers used government health datasets, 45% linked their data, 45% found the data access process easy and 27% found it difficult. Government-curated datasets were significantly more difficult to access compared to other-agency curated datasets (p = 0.009). Many respondents received their data in less than six months (58%), in aggregated or de-identified form (76%). Most reported performing their own data validation checks (70%). To assist in data reuse, almost 71% of researchers utilised (or created) contextual documentation, 69% a data dictionary, and 62% limitations documentation. Almost 20% of respondents were not aware if data quality information existed for the dataset they had accessed. Researchers reported data was managed by custodians with rigorous confidentiality/privacy processes (94%) and good data quality processes (76%), yet half lacked knowledge of what these processes entailed. Many respondents (78%) were unaware if dataset owners had obtained consent from the dataset subjects for research applications of the data.ConclusionConfidentiality/privacy processes and quality control activities undertaken by data custodians were well-regarded. Many respondents included data linkage to additional government datasets in their research. Ease of data access was variable. Some documentation types were well provided and used, but improvement is required for the provision of data quality statements and limitations documentation. Provision of information on participants' informed consent in a dataset is required.

Abstract Background Evidence for digital health programmes to support people living with stroke is growing. We assessed the feasibility of a protocol and procedures for the Recovery-focused Community support to Avoid readmissions and improve Participation after Stroke (ReCAPS) trial. Methods We conducted a mixed-method feasibility study. Participants with acute stroke were recruited from three hospitals (Melbourne, Australia). Eligibility: Adults with stroke discharged from hospital to home within 10 days, modified Rankin Score 0–4 and prior use of Short Message System (SMS)/email. While in hospital, recruited participants contributed to structured person-centred goal setting and completed baseline surveys including self-management skills and health-related quality of life. Participants were randomised 7–14 days after discharge via REDCap® (1:1 allocation). Following randomisation, the intervention group received a 12-week programme of personalised electronic support messages (average 66 messages sent by SMS or email) aligned with their goals. The control group received six electronic administrative messages. Feasibility outcomes included the following: number of patients screened and recruited, study retainment, completion of outcome measures and acceptability of the ReCAPS intervention and trial procedures (e.g. participant satisfaction survey, clinician interviews). Protocol fidelity outcomes included number of goals developed (and quality), electronic messages delivered, stop messages received and engagement with messages. We undertook inductive thematic analysis of interview/open-text survey data and descriptive analysis of closed survey questions. Results Between November 2018 and October 2019, 312 patients were screened; 37/105 (35%) eligible patients provided consent (mean age 61 years; 32% female); 33 were randomised (17 to intervention). Overall, 29 (88%) participants completed the12-week outcome assessments with 12 (41%) completed assessments in the allocated timeframe and 16 also completing the satisfaction survey (intervention=10). Overall, trial participants felt that the study was worthwhile and most would recommend it to others. Six clinicians participated in one of three focus group interviews; while they reported that the trial and the process of goal setting were acceptable, they raised concerns regarding the additional time required to personalise goals. Conclusion The study protocol and procedures were feasible with acceptable retention of participants. Consent and goal personalisation procedures should be centralised for the phase III trial to reduce the burden on hospital clinicians. Trial registration Australian New Zealand Clinical Trials Registry, ACTRN12618001468213 (date 31/08/2018); Universal Trial Number: U1111-1206-7237

Abstract Introduction Despite digital health tools being popular for supporting self‐management of chronic diseases, little research has been undertaken on stroke. We developed and pilot tested, using a randomized controlled design, a multicomponent digital health programme, known as Inspiring Virtual Enabled Resources following Vascular Events (iVERVE), to improve self‐management after stroke. The 4‐week trial incorporated facilitated person‐centred goal setting, with those in the intervention group receiving electronic messages aligned to their goals, versus limited administrative messages for the control group. In this paper, we describe the participant experience of the various components involved with the iVERVE trial. Methods Mixed method design: satisfaction surveys (control and intervention) and a focus group interview (purposively selected intervention participants). Experiences relating to goal setting and overall trial satisfaction were obtained from intervention and control participants, with feedback on the electronic message component from intervention participants. Inductive thematic analysis was used for interview data and open‐text responses, and closed questions were summarized descriptively. Triangulation of data allowed participants' perceptions to be explored in depth. Results Overall, 27/54 trial participants completed the survey (13 intervention: 52%; 14 control: 48%); and 5/8 invited participants in the intervention group attended the focus group. Goal setting: The approach was considered comprehensive, with the involvement of health professionals in the process helpful in developing realistic, meaningful and person‐centred goals. Electronic messages (intervention): Messages were perceived as easy to understand (92%), and the frequency of receipt was considered appropriate (11/13 survey; 4/5 focus group). The content of messages was considered motivational (62%) and assisted participants to achieve their goals (77%). Some participants described the benefits of receiving messages as a ‘reminder’ to act. Overall trial satisfaction: Messages were acceptable for educating about stroke (77%). Having options for short message services or email to receive messages was considered important. Feedback on the length of the intervention related to specific goals, and benefits of receiving the programme earlier after stroke was expressed. Conclusion The participant experience has indicated acceptance and utility of iVERVE. Feedback from this evaluation is invaluable to inform refinements to future Phase II and III trials, and wider research in the field. Patient or Public Contribution Two consumer representatives sourced from the Stroke Foundation (Australia) actively contributed to the design of the iVERVE programme. In this study, participant experiences directly contributed to the further development of the iVERVE intervention and future trial design.

Movement-based mindfulness interventions (MBI) are complex, multi-component interventions for which the design process is rarely reported. For people with stroke, emerging evidence suggests benefits, but mainstream programs are generally unsuitable. We aimed to describe the processes involved and to conduct a formative evaluation of the development of a novel yoga-based MBI designed for survivors of stroke. We used the Medical Research Council complex interventions framework and principles of co-design. We purposefully approached health professionals and consumers to establish an advisory committee for developing the intervention. Members collaborated and iteratively reviewed the design and content of the program, formatted into a training manual. Four external yoga teachers independently reviewed the program. Formative evaluation included review of multiple data sources and documentation (e.g., formal meeting minutes, focus group discussions, researcher observations). The data were synthesized using inductive thematic analysis. Three broad themes emerged: (a) MBI content and terminology; (b) manual design and readability; and (c) barriers and enablers to deliver the intervention. Various perspectives and feedback on essential components guided finalizing the program. The design phase of a novel yoga-based MBI was strengthened by interdisciplinary, consumer contributions and peer review. The 12-week intervention is ready for testing among survivors of stroke.

Abstract Objective: We aim to report the accuracy of linking data from a non‐government‐held clinical quality registry to national claims data and identify associated sources of systematic bias. Methods: Patients with stroke or transient ischaemic attack admitted to hospitals participating in the Australian Stroke Clinical Registry (AuSCR) were linked with Medicare and medication dispensings through the Australian Medicare enrolment file (MEF). The proportion of registrants in the datasets was calculated and factors associated with a non‐merge assessed using multivariable analyses. Results: A total of 17,980 AuSCR registrants (January 2010 – July 2014) were submitted for linkage (median age 76 years; 46% female; 67% ischaemic stroke); the proportion merged was 97% MEF, 93% Medicare and 95% medication dispensings. Data from registrants born in Asia were less likely to link with the MEF (adjusted Odds Ratio [aOR]: 0.20; 95%Confidence Interval [CI]: 0.15, 0.27). Data for those aged 85‐plus compared to those under 65 years were less likely to merge with Medicare (aOR 0.25; 95%CI:0.21, 0.30) but more likely to merge with dispensing claims data (aOR: 2.15 (95%CI:1.71, 2.69). Implications for public health: Linkage between the AuSCR, a national clinical quality registry and Commonwealth datasets was achieved and potential sources of bias were identified.

Abstract Introduction Correctly identifying people with suspected stroke is essential for ensuring rapid treatment. Our aims were to determine the sensitivity of emergency dispatcher and paramedic identification of patients with stroke, the factors associated with correct identification, and whether there were any implications for hospital arrival times. Methods Observational study using patient‐level data from the Australian Stroke Clinical Registry (2015–2017) linked with ambulance and emergency department records for the state of Victoria. The registry diagnosis was the reference standard to compare with the provisional diagnoses made by emergency services personnel classified as “suspected” and “not suspected” stroke/transient ischemic attack (TIA). Multivariable logistic and quintile regressions were used to determine factors associated with correct identification and timely arrival to hospital. Results Overall, 4717 (64%) were matched to ambulance transport records (median age: 73 years, 43% female). Stroke/TIA was suspected in 56% of registrants by call‐takers and 69% by paramedics. Older patients (75+ years) (adjusted odds ratio [aOR]: 0.61; 95% confidence interval [CI]: 0.49–0.75), females (aOR: 0.86; 95% CI: 0.75–0.99), those with severe stroke or intracerebral hemorrhage were less often suspected as stroke. Cases identified as stroke had a shorter arrival time to hospital (unadjusted median minutes: stroke, 54 [43, 72] vs not stroke, 66 [51, 89]). Conclusions Emergency dispatchers and paramedics identified over half of patients with stroke in the prehospital setting. Important patient characteristics, such as being female and those having a severe stroke, were found that may enable refinement of prehospital ambulance protocols and dispatcher/paramedic education. Those correctly identified as stroke, arrived earlier to hospital optimizing their chances of receiving time‐critical treatments.

Objectives Patient-reported outcomes (PROs) are increasingly used to measure the patient’s perspective of their outcomes following healthcare interventions. The aim of this study was to determine the preferred formats for reporting service-level PROs data to clinicians, researchers and managers to support greater utility of these data to improve healthcare and patient outcomes.Setting Healthcare professionals receiving PRO data feedback at the health service level.Participants An interdisciplinary Project Working Group comprised of clinicians participated in three workshops to codesign reporting templates of summarised PRO data (modified Rankin Scale, EuroQol Five Dimension Descriptive System, EuroQol Visual Analogue Scale and Hospital Anxiety and Depression Scale) using a modified Delphi process. An electronic survey was then distributed to short list the preferred templates among a broad sample of clinical end users. A final workshop was undertaken with the Project Working Group to review results and reach consensus on the final templates.Primary and secondary outcome measures The recommendation of preferred PRO summary data feedback templates and guiding principles for reporting aggregate PRO data to clinicians was the primary outcome. A secondary outcome was the identification of perceived barriers and enablers to the use of PRO data in hospitals. For each outcome measure, quantitative and qualitative data were summarised.Results 31 Working Group members (19 stroke, 2 psychology, 1 pharmacy, 9 researchers) participated in the workshops, where 25/55 templates were shortlisted for wider assessment. The survey was completed by 114 end users. Strongest preferences were identified for bar charts (37/82 votes, 45%) and stacked bar charts (37/91 votes, 41%). At the final workshop, recommendations to enhance communication of PROs data for comparing health service performance were made including tailoring feedback to professional roles and use of case-mix adjustment to ensure fair comparisons.Conclusions Our research provides guidance on PROs reporting for optimising data interpretation and comparing hospital performance.

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.

Abstract Background Electronic communication is used in various populations to achieve health goals, but evidence in stroke is lacking. We pilot tested the feasibility and potential effectiveness of a novel personalised electronic self-management intervention to support person-centred goal attainment and secondary prevention after stroke. Methods A phase I, prospective, randomised controlled pilot trial (1:1 allocation) with assessor blinding, intention-to-treat analysis, and a process evaluation. Community-based survivors of stroke were recruited from participants in the Australian Stroke Clinical Registry (AuSCR) who had indicated their willingness to be contacted for research studies. Inclusion criteria include 1–2 years following hospital admission for stroke and living within 50 km of Monash University (Melbourne). Person-centred goals were set with facilitation by a clinician using a standardised template. The intervention group received electronic support messages aligned to their goals over 4 weeks. The control group received only 2–3 electronic administrative messages. Primary outcomes were study retention, goal attainment (assessed using Goal Attainment Scaling method) and satisfaction. Secondary outcomes were self-management (Health Education Impact Questionnaire: 8 domains), quality of life, mood and acceptability. Results Of 340 invitations sent from AuSCR, 73 responded, 68 were eligible and 57 (84%) completed the baseline assessment. At the goal-setting stage, 54/68 (79%) were randomised (median 16 months after stroke): 25 to intervention (median age 69 years; 40% female) and 29 to control (median age 68 years; 38% female). Forty-five (83%) participants completed the outcome follow-up assessment. At follow-up, goal attainment (mean GAS-T score ≥ 50) in the intervention group was achieved for goals related to function, participation and environment (control: environment only). Most intervention participants provided positive feedback and reported that the iVERVE messages were easy to understand (92%) and assisted them in achieving their goals (77%). We found preliminary evidence of non-significant improvements between the groups for most self-management domains (e.g. social integration and support: β coefficient 0.34; 95% CI − 0.14 to 0.83) and several quality-of-life domains in favour of the intervention group. Conclusion These findings support the need for further randomised effectiveness trials of the iVERVE program to be tested in people with new stroke. Trial registration ANZCTR, ACTRN12618001519246 . Registered on 11 September 2018—retrospectively registered.

Abstract Background In the Quality in Acute Stroke Care (QASC) trial undertaken in stroke units (SUs) located in New South Wales (NSW), Australia (2005–2010), facilitated implementation of a nurse-led care bundle to manage fever, hyperglycaemia and swallowing (FeSS protocols) reduced death and disability for patients with stroke. We aimed to determine subsequent adherence to the bundled FeSS processes (reflective of the protocols) between 2013 and 2017 in Australian hospitals, and examine whether changes in adherence to these processes varied based on previous participation in the QASC trial or subsequent statewide scale-up (QASCIP—Quality in Acute Stroke Care Implementation Project) and presence of an SU. Methods Cross-sectional, observational study using self-reported organisational survey and retrospective clinical audit data from the National Acute Services Stroke Audit (2013, 2015, 2017). Mixed-effects logistic regression was performed with dependent variables: (1) composite outcome measure reflecting compliance with the FeSS protocols and (2) individual FeSS processes, including the year of audit as an independent variable, adjusted for correlation of outcomes within hospital. Separate models including interaction terms between the year of audit and previous participation in QASC/QASCIP and year of audit and SU were also generated. Results Hospital participation included the following: 2013—124 hospitals, 3741 cases; 2015—112 hospitals, 4087 cases; and 2017—117 hospitals, 4192 cases. An 80% increase in the odds of receiving the composite outcome in 2017 compared to 2013 was found (2013, 30%; 2017, 41%; OR 1.8; 95% CI 1.6, 2.0; p

Abstract Background Organizational context is one factor influencing the translation of evidence into practice, but data pertaining to patients with acute stroke are limited. We aimed to determine the associations of organizational context in relation to four important evidence-based stroke care processes. Methods This was a mixed methods cross-sectional study. Among 19 hospitals in Queensland, Australia, a survey was conducted of the perceptions of stroke clinicians about their work using the Alberta Context Tool (ACT), a validated measure covering 10 concepts of organizational context, and with additional stroke-specific contextual questions. These data were linked to the Australian Stroke Clinical Registry (AuSCR) to determine the relationship with receipt of evidence-based acute stroke care (acute stroke unit admission, use of thrombolysis for those with acute ischemic stroke, receipt of a written care plan on discharge, and prescription of antihypertensive medications on discharge) using quantile regression. Exploratory cluster analysis was used to categorize hospitals into high and low context groups based on all of the 10 ACT concepts. Differences in adherence to care processes between the two groups were examined. Results A total of 215 clinicians completed the survey (50% nurses, 37% allied health staff, 10% medical practitioners), with 81% being in their current role for at least 1 year. There was good reliability (∞ 0.83) within the cohort to allow pooling of professional groups. Greater ACT scores, especially for social capital (μ 9.00, 95% confidence interval [CI] 4.86 to 13.14) and culture (μ 7.33, 95% CI 2.05 to 12.62), were associated with more patients receiving stroke unit care. There was no correlation between ACT concepts and other care processes. Working within higher compared to lower context environments was associated with greater proportions of patients receiving stroke unit care (88.5% vs. 69.0%) and being prescribed antihypertensive medication at discharge (62.5% vs. 52.0%). Staff from higher context hospitals were more likely to value medical and/or nursing leadership and stroke care protocols. Conclusions Overall organizational context, and in particular aspects of culture and social capital, are associated with the delivery of some components of evidence-based stroke care, offering insights into potential pathways for improving the implementation of proven therapies.

Background: Discharge planning is recommended to optimise the transition from acute care to home for patients admitted with stroke. Despite this guideline recommendation, many patients do not receive a discharge care plan. Also, there is limited evidence on factors influencing the provision of discharge care plan post-stroke. We evaluated patient, clinical and system factors associated with receiving a care plan on discharge from hospital back to the community after stroke. Methods: This was an observational cohort study of patients with acute stroke who were discharged to the community between 2009–2013, using data from the Australian Stroke Clinical Registry linked to hospital administrative data. For this analysis, we used merged dataset containing information on patient demographics, clinical characteristics, and receipt of acute care processes. Multivariable logistic regression models were used to determine factors associated with receiving a discharge care plan. Results: Among 7812 eligible patients (39 hospitals, median age 73 years, 44.7% female, 56.9% ischaemic stroke), 47% received a care plan at discharge. The odds of receiving a discharge care plan increased over time (odds ratio [OR] 1.39 per year, 95% CI 1.37–1.48), and varied between hospitals. Factors associated with receiving a discharge care plan included greater socioeconomic position (OR 1.18, 95% CI 1.02–1.38), diagnosis of ischaemic stroke (OR 1.18, 95% CI 1.05–1.33), greater stroke severity (OR 1.15, 95% CI 1.01–1.31), or being discharged on antihypertensive medication (OR 3.07, 95% CI 2.69–3.50). In contrast, factors associated with a reduced odds of receiving a discharge care plan included being aged 85+ years (vs300 beds; OR 0.30, 95% CI 0.10–0.92). Conclusions: Implementing practices to target people who are older, discharged to residential aged care, or discharged on a weekend may improve discharge planning and post-discharge care after stroke.

Background: Australian Primary Care Practitioners are incentivised through Medicare funded policies to provide chronic disease management and facilitate multidisciplinary care. Little is known about how these policies are claimed in the long-term management of stroke. The objective of this study was to describe the use of funded primary care policies for people with stroke by impairment status. Methods: Linked Australian Stroke Clinical Registry (2010–2014) and Medicare data from adults with 90–180 days post-stroke EQ-5D health status survey data and admitted to one of 26 participating Australian hospitals were analysed. Medicare item claims for Primary Care Practitioner led chronic disease management and multidisciplinary care coordination policies, during the 18 months following stroke are described. Registrants were classified into impairment groups using their EQ-5D dimension responses through Latent Class Analysis. Associations between impairment and use of relevant primary care policies were explored using multivariable regression. Results: 5432 registrants were included (median age 74 years, 44% female, 86% ischaemic), 39% had a chronic disease management claim and 39% a multidisciplinary care coordination claim. Three latent classes emerged representing minimal, moderate and severe impairment. Compared to minimal, those with severe impairment were least likely to receive chronic disease management (adjusted Odds Ratio (aOR): 0.61, 95% Confidence Interval (CI): 0.49, 0.75) but were most likely to receive multidisciplinary care coordination. Podiatry was the commonest allied health service prescribed, regardless of impairment. Conclusions: Less than half of people living with stroke had a claim for primary care initiated chronic disease management, with mixed access for those with severe impairments.

Introduction Recent 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 Approach We 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. Results 17,980 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

Introduction Despite 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 Approach We 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. Results Among 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

Introduction and Purpose Chronic Disease Management (CDM) plans are used by general practitioners to manage chronic diseases such as stroke. However, there is limited evidence that being on these plans improve adherence to secondary prevention medications after stroke. We aimed to assess the association of the duration on a CDM plan in improving adherence to secondary prevention medications following stroke. Methods Australian survivors of stroke or transient ischaemic attack were participants from the STAND FIRM trial. Patients were individually linked with claims for CDM plans from Medicare and dispensings of secondary prevention medications from the Pharmaceutical Benefits Scheme. We estimated (1) duration on a CDM plan based on the timing and Medicare items claimed and (2) the proportion of days that patients would have been covered by these medications (PDC), while accounting for deaths and instances of over-supply. Dosage for each quantity of medication was determined by the regularity in which patients returned for a refill. Logistic regression was used to evaluate factors associated with ≥80% adherence, up to 3 years after stroke, for each of antihypertensive, antithrombotic and lipid-modifying drugs. Results The median PDC for 563 patients (median age 70yrs; 36% female) ranged from 92% to 95% among the three classes of medications. Approximately 27% did not take up a CDM plan, 33% were on plans for

Introduction To 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 Approach Using 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). Results Among 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

Introduction Stroke is a leading cause of death and disability. Since 2012, our innovative national data linkage program, has enabled the successful linkage of data from the Australian Stroke Clinical Registry (AuSCR) with national and state-based datasets to investigate the continuum of stroke care and associated outcomes. Objectives and Approach Using stroke as a case study, in this symposium we will describe the use of linked data to undertake clinical and economic evaluations and contribute new knowledge for policy and practice. We have undertaken a range of iterative and innovative projects linking the AuSCR (used now in >80 public hospitals across Australia with follow-up survey of patients between 90-180 days) with various administrative datasets. Linkages with the National Death Index, inpatient admissions and emergency presentations, Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Schedule (MBS), Aged Care services; Ambulance Victoria, Australian Rehabilitation Outcomes Centre and general practice network datasets (POLAR) have been achieved. Results The symposium will provide case studies and results from four data linkage projects involving the AuSCR: 1) Stroke123 (NHMRC: #1034415), a study to investigate the impact of quality of acute care on admission/emergency presentations and survival; 2) PRECISE (NHMRC:#1141848), a study to evaluate models of primary care involving linkages with PBS/MBS, aged care services and admissions/emergency data; 3) AMBULANCE: a study to investigate how pre-hospital care affects acute stroke care involving linkages with the ambulance and admissions/emergency datasets; and 4) POLAR: a study to understand the long-term management of stroke involving linkages with primary health data. Conclusion / Implications The National Stroke Data Linkage Program has been visionary and remains highly contemporary in the field of linked data. A unique feature of this program is the active participation of clinicians and policy-makers to ensure the evidence generated have direct benefits for accelerating change in practice and informing policy.

Introduction The 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. Aim To 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. Methods Person-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. Analysis The 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. Conclusion Completion 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.

Abstract Objective: To describe the challenges of obtaining state and nationally held data for linkage to a non‐government national clinical registry. Methods: We reviewed processes negotiated to achieve linkage between the Australian Stroke Clinical Registry (AuSCR), the National Death Index, and state held hospital data. Minutes from working group meetings, national workshop meetings, and documented communications with health department staff were reviewed and summarised. Results: Time from first application to receipt of data was more than two years for most state data‐sets. Several challenges were unique to linkages involving identifiable data from a non‐government clinical registry. Concerns about consent, the re‐identification of data, duality of data custodian roles and data ownership were raised. Requirements involved the development of data flow methods, separating roles and multiple governance and ethics approvals. Approval to link death data presented the fewest barriers. Conclusion: To our knowledge, this is the first time in Australia that person‐level data from a clinical quality registry has been linked to hospital and mortality data across multiple Australian jurisdictions. Implications for Public Health: The administrative load of obtaining linked data makes projects such as this burdensome but not impossible. An improved national centralised strategy for data linkage in Australia is urgently needed.

BACKGROUND:There is limited evidence on whether having pre-existing cardiovascular disease (CVD) or risk factors for CVD such as diabetes, ensures greater knowledge of risk factors important for motivating preventative behaviours. Our objective was to compare knowledge among the Australian public participating in a health check program and their risk status. METHODS:Data from the Stroke Foundation 'Know your numbers' program were used. Staff in community pharmacies provided opportunistic health checks (measurement of blood pressure and diabetes risk assessment) among their customers. Participants were categorised: 1) CVD ± risk of CVD: history of stroke, heart disease or kidney disease, and may have risk factors; 2) risk of CVD only: reported having high blood pressure, high cholesterol, diabetes or atrial fibrillation; and 3) CVD risk free (no CVD or risk of CVD). Multivariable logistic regression analyses were performed including adjustment for age and sex. FINDINGS:Among 4,647 participants, 12% had CVD (55% male, 85% aged 55+ years), 47% were at risk of CVD (40% male, 72% 55+ years) and 41% were CVD risk free (33% male, 27% 55+ years). Participants with CVD (OR: 0.66; 95% CI: 0.55, 0.80) or risk factors for CVD (OR: 0.65; 95% CI: 0.57, 0.73) had poorer knowledge of the risk factors for diabetes/CVD compared to those who were CVD risk free. After adjustment, only participants with risk factors for CVD (OR: 0.80; 95% CI: 0.69, 0.93) had poorer knowledge. Older participants (55+ years) and men had poorer knowledge of diabetes/CVD risk factors and complications of diabetes. CONCLUSIONS:Participants with poorer knowledge of risk factors were older, more often male or were at risk of developing CVD compared with those who were CVD risk free. Health education in these high risk groups should be a priority, as diabetes and CVD are increasing in prevalence throughout the world.

Following publication of the original article [1], the authors reported an error in one of the authors’ names. In this Correction the incorrect and correct author name are shown. The original article has been corrected.