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Abstract Background Nowhere is optimising healthcare staff retention more important than in primary health care (PHC) settings in remote Australia, where there are unacceptably high rates of staff burnout and turnover. Ensuing consequences for the remote health services and the community are acute – staffing shortfalls in clinics; organisational instability; excessive costs associated with frequent staff recruitment and orientation; diminished access to PHC for patients in need; and lack of continuity of patient care; all of which further entrench poor health outcomes for the community. Optimising remote healthcare staff retention is critical in order to provide high quality and continued PHC. Currently, however, there is paucity of knowledge to inform targeted and effective retention strategies in remote health services. This research program seeks to develop a stronger evidence base to understand (i) what retention strategies are effective in improving morale, job satisfaction, intention to remain in the job, and consequent length of service for remote healthcare staff; (ii) how best to ‘bundle’ these strategies for different health workforce groups; and (iii) how these ‘bundles’ work in different service contexts. Methods This paper describes a five-year implementation research program in partnership with twelve remote Aboriginal and Torres Strait Islander Community Controlled Health Services (ATSICCHS) in the Northern Territory and Queensland, Australia. Overall methodology follows a participatory action research approach which incorporates co-design and realist elements. The program comprises two broad phases involving evidence consolidation and synthesis (Phase 1), and co-design, implementation, and prospective evaluation of ‘bundles’ of retention strategies (Phase 2) to improve retention of healthcare staff in participating ATSICCHSs. Discussion This innovative research program has the potential to develop a comprehensive evidence base required to optimise health workforce retention in remote health services. This new evidence will strengthen understanding of what ‘bundles’ of retention strategies are effective, for which groups of employees, and how they work to improve staff retention.

Abstract Background Engagement and partnership with consumers and communities throughout research processes produces high quality research meeting community needs and promoting translation of research into improved policy and practice. Partnership is critical in research involving Aboriginal and/or Torres Strait Islander people (First Nations Peoples) to ensure cultural safety. We present lessons from the design, implementation and progress of the National Health and Medical Research Council funded INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on hemodialysis (INFERR) clinical trial. Main body The trial was designed to understand the benefits and harms of iron therapy in First Nations Australians on haemodialysis with anaemia and hyperferritinaemia. The lack of evidence for treatment was discussed with patients who were potential participants. A key element ensuring safe conduct of the INFERR trial was the establishment of the Indigenous Reference Groups (IRGs) comprising of dialysis patients based in the Top End of Australia and Central Australia. Two IRGs were needed based on advice from First Nations communities and researchers/academics on the project regarding local cultural differences and approaches to trial conduct. The IRGs underpin culturally safe trial conduct by providing input into study materials and translating study findings into effective messages and policies for First Nations dialysis patients. Throughout the trial conduct, the IRGs’ role has developed to provide key mechanisms for advice and guidance regarding research conduct both in this study and more broadly. Support provided to the IRGs by trial First Nations Research Officers and independent First Nations researchers/academics who simplify research concepts is critical. The IRGs have developed feedback documents and processes to participants, stakeholders, and the renal units. They guarantee culturally safe advice for embedding findings from the trial into clinical practice guidelines ensuring evidence-based approaches in managing anaemia in haemodialysis patients with hyperferritinaemia. Conclusion Active consumer and community partnership is critical in research conduct to ensure research impact. Strong partnership with consumers in the INFERR clinical trial has demonstrated that First Nations Consumers will engage in research they understand, that addresses health priorities for them and where they feel respected, listened to, and empowered to achieve change.

Abstract Background The burden of chronic kidney disease (CKD) is high in the Northern Territory (NT), Australia. This study aims to describe the healthcare use and associated costs of people at risk of CKD (e.g. acute kidney injury, diabetes, hypertension, and cardiovascular disease) or living with CKD in the NT, from a healthcare funder perspective. Methods We included a retrospective cohort of patients at risk of, or living with CKD, on 1 January 2017. Patients on kidney replacement therapy were excluded from the study. Data from the Territory Kidney Care database, encompassing patients from public hospitals and primary health care services across the NT was used to conduct costing. Annual healthcare costs, including hospital, primary health care, medication, and investigation costs were described over a one-year follow-up period. Factors associated with high total annual healthcare costs were identified with a cost prediction model. Results Among 37,398 patients included in this study, 23,419 had a risk factor for CKD while 13,979 had CKD (stages 1 to 5, not on kidney replacement therapy). The overall mean (± SD) age was 45 years (± 17), and a large proportion of the study cohort were First Nations people (68%). Common comorbidities in the overall cohort included diabetes (36%), hypertension (32%), and coronary artery disease (11%). Annual healthcare cost was lowest in those at risk of CKD (AUD$7,958 per person) and highest in those with CKD stage 5 (AUD$67,117 per person). Inpatient care contributed to the majority (76%) of all healthcare costs. Predictors of increased total annual healthcare cost included more advanced stages of CKD, and the presence of comorbidities. In CKD stage 5, the additional cost per person per year was + $53,634 (95%CI 32,769 to 89,482, p

Abstract Background The burden of chronic conditions is growing in Australia with people in remote areas experiencing high rates of disease, especially kidney disease. Health care in remote areas of the Northern Territory (NT) is complicated by a mobile population, high staff turnover, poor communication between health services and complex comorbid health conditions requiring multidisciplinary care. Aim This paper aims to describe the collaborative process between research, government and non-government health services to develop an integrated clinical decision support system to improve patient care. Methods Building on established partnerships in the government and Aboriginal Community-Controlled Health Service (ACCHS) sectors, we developed a novel digital clinical decision support system for people at risk of developing kidney disease (due to hypertension, diabetes, cardiovascular disease) or with kidney disease. A cross-organisational and multidisciplinary Steering Committee has overseen the design, development and implementation stages. Further, the system’s design and functionality were strongly informed by experts (Clinical Reference Group and Technical Working Group), health service providers, and end-user feedback through a formative evaluation. Results We established data sharing agreements with 11 ACCHS to link patient level data with 56 government primary health services and six hospitals. Electronic Health Record (EHR) data, based on agreed criteria, is automatically and securely transferred from 15 existing EHR platforms. Through clinician-determined algorithms, the system assists clinicians to diagnose, monitor and provide guideline-based care for individuals, as well as service-level risk stratification and alerts for clinically significant events. Conclusion Disconnected health services and separate EHRs result in information gaps and a health and safety risk, particularly for patients who access multiple health services. However, barriers to clinical data sharing between health services still exist. In this first phase, we report how robust partnerships and effective governance processes can overcome these barriers to support clinical decision making and contribute to holistic care.

Abstract Background Little is known about the relationship between patients' cultural and linguistic backgrounds and patient activation, especially in people with diabetes and chronic kidney disease (CKD). We examined the association between culturally and linguistically diverse (CALD) background and patient activation and evaluated the impact of a codesigned integrated kidney and diabetes model of care on patient activation by CALD status in people with diabetes and CKD. Methods This longitudinal study recruited adults with diabetes and CKD (Stage 3a or worse) who attended a new diabetes and kidney disease service at a tertiary hospital. All completed the patient activation measure at baseline and after 12 months and had demographic and clinical data collected. Patients from CALD backgrounds included individuals who spoke a language other than English at home, while those from non‐CALD backgrounds spoke English only as their primary language. Paired t‐tests compared baseline and 12‐month patient activation scores by CALD status. Results Patients from CALD backgrounds had lower activation scores (52.1 ± 17.6) compared to those from non‐CALD backgrounds (58.5 ± 14.6) at baseline. Within‐group comparisons showed that patient activation scores for patients from CALD backgrounds significantly improved by 7 points from baseline to 12 months follow‐up (52.1 ± 17.6–59.4 ± 14.7), and no significant change was observed for those from non‐CALD backgrounds (58.5 ± 14.6–58.8 ± 13.6). Conclusions Among patients with diabetes and CKD, those from CALD backgrounds report worse activation scores. Interventions that support people from CALD backgrounds with comorbid diabetes and CKD, such as the integrated kidney and diabetes model of care, may address racial and ethnic disparities that exist in patient activation and thus improve clinical outcomes. Patient or Public Contribution Patients, caregivers and national consumer advocacy organisations (Diabetes Australia and Kidney Health Australia) codesigned a new model of care in partnership with healthcare professionals and researchers. The development of the model of care was informed by focus groups of patients and healthcare professionals and semi‐structured interviews of caregivers and healthcare professionals. Patients and caregivers also provided a rigorous evaluation of the new model of care, highlighting its strengths and weaknesses.

Abstract Background In the Northern Territory (NT) the prevalence of otitis media (OM) in young Aboriginal children living in remote communities has persisted at around 90% over the last few decades. OM-associated hearing loss can cause developmental delay and adversely impact life course trajectories. This study examined the 5-year trends in OM prevalence and quality of ear health services in remote NT communities. Methods A retrospective analysis was performed on de-identified clinical data for 50 remote clinics managed by the NT Government. We report a 6-monthly cascade analysis of the proportions of children 0–16 years of age receiving local guideline recommendations for surveillance, OM treatment and follow-up at selected milestones between 2014 and 2018. Results Between 6,326 and 6,557 individual children were included in the 6-monthly analyses. On average, 57% (95%CI: 56–59%) of eligible children had received one or more ear examination in each 6-monthly period. Of those examined, 36% (95%CI: 33–40%) were diagnosed with some type of OM, of whom 90% had OM requiring either immediate treatment or scheduled follow-up according to local guidelines. Outcomes of treatment and follow-up were recorded in 24% and 23% of cases, respectively. Significant decreasing temporal trends were found in the proportion diagnosed with any OM across each age group. Overall, this proportion decreased by 40% over the five years (from 43 to 26%). Conclusions This cascade of care analysis found that ear health surveillance and compliance with otitis media guidelines for treatment and follow-up were both low. Further research is required to identify effective strategies that improve ear health services in remote settings.

Abstract Background Ferritin levels are used to make decisions on therapy of iron deficiency in patients with chronic kidney disease (CKD). Hyperferritinaemia, common among patients with CKD from the Northern Territory (NT) of Australia, makes use of ferritin levels as per clinical guidelines challenging. No gold standard assay exists for measuring ferritin levels. Significant variability between results from different assays creates challenges for clinical decision-making regarding iron therapy. In the NT, different laboratories use different methods. In 2018, Territory Pathology changed the assay from Abbott ARCHITECT i1000 (AA) to Ortho-Clinical Diagnostics Vitros 7600 (OCD). This was during the planning of the INtravenous iron polymaltose for First Nations Australian patients with high FERRitin levels on haemodialysis (INFERR) clinical trial. The trial design was based on AA assay ferritin levels. We compared the two assays’ level of agreement in measuring ferritin levels in CKD patients. Methods Samples from INFERR clinical trial participants were analysed. Other samples from patients whose testing were completed the same day on OCD analyzers and run within 24 h on AA analyzers were added to ensure wide range of ferritin levels, adding statistical strength to the comparison. Ferritin levels from both assays were compared using Pearson’s correlation, Bland–Altman, Deming and Passing-Bablok regression analyses. Differences between sample types, plasma and serum were assessed. Results Sixty-eight and 111 (179) samples from different patients from Central Australia and Top End of Australia, respectively, were analyzed separately and in combination. The ferritin levels ranged from 3.1 µg/L to 3354 µg/L and 3 µg/L to 2170 µg/L for AA and OCD assays respectively. Using Bland–Altman, Deming and Passing-Bablok regression methods for comparison, ferritin results were consistently 36% to 44% higher with AA than OCD assays. The bias was up to 49%. AA ferritin results were the same in serum and plasma. However, OCD ferritin results were 5% higher in serum than plasma. Conclusions When making clinical decisions, using ferritin results from the same assay in patients with CKD is critical. If the assay is changed, it is essential to assess agreement between results from the new and old assays. Further studies to harmonize ferritin assays are required.

Background: Diabetes is a common condition that often requires increasing intensity of glucose lowering regimens. We describe the population trends in the intensity of regimens, and associations of achieved HbA1c and treatment persistence. Methods: We performed an episode-based analysis of the EXTEND-45 dataset, assessing trends in glucose lowering therapy and the associated outcomes of HbA1c and treatment persistence. Trends from 2009 to 2014 were assessed for each intensity level of a glucose lowering therapy regimen, according to the year prescribed. Episodes were defined as the length of time that an individual adhered to a regimen through ongoing prescription, and this was used as to define persistence. Mean HbA1c were calculated for each episode. Persistence and HbA1c were compared across the different regimens of treatment intensity. Results: The intensity of glucose lowering therapy remained stable over time with around one third of episodes utilising a single glucose lowering agent. Mean HbA1c was higher for insulin-based treatment (mean 7.9 % SD = 1.3 %), and lowest for episodes of no glucose lowering treatment (mean 6.3 % (SD = 0.8 %). Around half of participants achieved glycemic targets of 7 %. While there was considerable variation in persistence, the median persistence was around 3 months (94 days, IQR 51–201 days). Conclusions: Therapeutic intensity for diabetes has remained stable over 9 years. Whilst there was considerable variability in persistence with glucose lowering regimens, the mean duration of all regimens was less than a year. Requirement for higher intensity treatment with insulin was related to poorer glycemic control.

Abstract Background Electronic health records can be used for population-wide identification and monitoring of disease. The Territory Kidney Care project developed algorithms to identify individuals with chronic kidney disease (CKD) and several commonly comorbid chronic diseases. This study aims to describe the development and validation of our algorithms for CKD, diabetes, hypertension, and cardiovascular disease. A secondary aim of the study was to describe data completeness of the Territory Kidney Care database. Methods The Territory Kidney Care database consolidates electronic health records from multiple health services including public hospitals (n = 6) and primary care health services (> 60) across the Northern Territory, Australia. Using the database (n = 48,569) we selected a stratified random sample of patients (n = 288), which included individuals with mild to end-stage CKD. Diagnostic accuracy of the algorithms was tested against blinded manual chart reviews. Data completeness of the database was also described. Results For CKD defined as CKD stage 1 or higher (eGFR of any level with albuminuria or persistent eGFR 99% sensitivity and specificity. For related comorbidities – algorithm sensitivity and specificity results were 75% and 97% for diabetes; 85% and 88% for hypertension; and 79% and 96% for cardiovascular disease. Conclusions We developed and validated algorithms to identify CKD and related chronic diseases within electronic health records. Validation results showed that CKD algorithms have a high degree of diagnostic accuracy compared to traditional administrative codes. Our highly accurate algorithms present new opportunities in early kidney disease detection, monitoring, and epidemiological research.

Abstract Background Clinical decision support (CDS) is increasingly used to facilitate chronic disease care. Despite increased availability of electronic health records and the ongoing development of new CDS technologies, uptake of CDS into routine clinical settings is inconsistent. This qualitative systematic review seeks to synthesise healthcare provider experiences of CDS—exploring the barriers and enablers to implementing, using, evaluating, and sustaining chronic disease CDS systems. Methods A search was conducted in Medline, CINAHL, APA PsychInfo, EconLit, and Web of Science from 2011 to 2021. Primary research studies incorporating qualitative findings were included if they targeted healthcare providers and studied a relevant chronic disease CDS intervention. Relevant CDS interventions were electronic health record-based and addressed one or more of the following chronic diseases: cardiovascular disease, diabetes, chronic kidney disease, hypertension, and hypercholesterolaemia. Qualitative findings were synthesised using a meta-aggregative approach. Results Thirty-three primary research articles were included in this qualitative systematic review. Meta-aggregation of qualitative data revealed 177 findings and 29 categories, which were aggregated into 8 synthesised findings. The synthesised findings related to clinical context, user, external context, and technical factors affecting CDS uptake. Key barriers to uptake included CDS systems that were simplistic, had limited clinical applicability in multimorbidity, and integrated poorly into existing workflows. Enablers to successful CDS interventions included perceived usefulness in providing relevant clinical knowledge and structured chronic disease care; user confidence gained through training and post training follow-up; external contexts comprised of strong clinical champions, allocated personnel, and technical support; and CDS technical features that are both highly functional, and attractive. Conclusion This systematic review explored healthcare provider experiences, focussing on barriers and enablers to CDS use for chronic diseases. The results provide an evidence-base for designing, implementing, and sustaining future CDS systems. Based on the findings from this review, we highlight actionable steps for practice and future research. Trial registration PROSPERO CRD42020203716

Abstract Background The high burden of chronic kidney disease in First Nations peoples requires urgent attention. Empowering people to self-manage their own condition is key, along with promotion of traditional knowledge and empowerment of First Nations communities. This study explores the potential of a culturally responsive tool, already found to have high acceptability and feasibility among First Nations people, to support self-management for First Nations people with kidney failure. The Stay Strong app is a holistic wellbeing intervention. This study explores the suitability of the Stay Strong app to support self-management as shown by the readiness of participants to engage in goal setting. Data were collected during a clinical trial which followed adaption of research tools and procedures through collaboration between content and language experts, and community members with lived experience of kidney failure. Methods First Nations (i.e., Aboriginal and Torres Strait Islander) participants receiving haemodialysis in the Northern Territory (n = 156) entered a three-arm, waitlist, single-blind randomised controlled trial which provided collaborative goal setting using the Stay Strong app at baseline or at 3 months. Qualitative data gathered during delivery of the intervention were examined using both content and thematic analysis. Results Almost all participants (147, 94%) received a Stay Strong session: of these, 135 (92%) attended at least two sessions, and 83 (56%) set more than one wellbeing goal. Using a deductive approach to manifest content, 13 categories of goals were identified. The three most common were to: ‘connect with family or other people’, ‘go bush/be outdoors’ and ‘go home/be on country’. Analysis of latent content identified three themes throughout the goals: ‘social and emotional wellbeing’, ‘physical health’ and ‘cultural connection’. Conclusion This study provides evidence of the suitability of the Stay Strong app for use as a chronic condition self-management tool. Participants set goals that addressed physical as well as social and emotional wellbeing needs, prioritising family, country, and cultural identity. The intervention aligns directly with self-management approaches that are holistic and prioritise individual empowerment. Implementation of self-management strategies into routine care remains a key challenge and further research is needed to establish drivers of success.

Background Between 1964 and 1996, the 10-year survival of patients having valve replacement surgery for rheumatic heart disease (RHD) in the Northern Territory, Australia, was 68%. As medical care has evolved since then, this study aimed to determine whether there has been a corresponding improvement in survival.Methods A retrospective study of Aboriginal patients with RHD in the Northern Territory, Australia, having their first valve surgery between 1997 and 2016. Survival was examined using Kaplan-Meier and Cox regression analysis.Findings The cohort included 281 adults and 61 children. The median (IQR) age at first surgery was 31 (18–42) years; 173/342 (51%) had a valve replacement, 113/342 (33%) had a valve repair and 56/342 (16%) had a commissurotomy. There were 93/342 (27%) deaths during a median (IQR) follow-up of 8 (4–12) years. The overall 10-year survival was 70% (95% CI: 64% to 76%). It was 62% (95% CI: 53% to 70%) in those having valve replacement. There were 204/281 (73%) adults with at least 1 preoperative comorbidity. Preoperative comorbidity was associated with earlier death, the risk of death increasing with each comorbidity (HR: 1.3 (95% CI: 1.2 to 1.5), p50 mm Hg before surgery (HR 1.9 (95% CI: 1.2 to 3.1) p=0.007) were independently associated with death.Interpretation Survival after valve replacement for RHD in this region of Australia has not improved. Although the patients were young, many had multiple comorbidities, which influenced long-term outcomes. The increasing prevalence of complex comorbidity in the region is a barrier to achieving optimal health outcomes.

This protocol describes the methodology and methods for a collaborative project with eight Aboriginal and Torres Strait Islander primary health care (PHC) organisations, across three Australian states and one territory, to increase clinical service performance and access to preventive health and health promotion services for preventing, identifying, treating, and managing dementia risk in Aboriginal and Torres Strait Islander communities. Aboriginal participatory action research (APAR) methodology will be the framework for this project, incorporating continuous quality improvement (CQI), informed by research yarning with stakeholder groups, comprising community members and PHC staff and service providers and data collected from the auditing of client health records and the mapping of existing clinical processes and health services at each partnering PHC organisation. The qualitative and quantitative data will be summarised and discussed with stakeholder groups. Priorities will be identified and broken down into tangible PHC organisation deliverable strategies and programs, which will be co-developed with stakeholder groups and implemented cyclically over 24 months using the Plan, Do, Study, Act model of change. Key project outcome measures include increased clinical service performance and availability of preventive health and health promotion services for safeguarding against dementia. Project implementation will be evaluated for quality and transparency from an Indigenous perspective using an appropriate appraisal tool. The project processes, impact, and sustainability will be evaluated using the RE-AIM framework. A dementia safeguarding framework and accompanying tool kit will be developed from this work to support Aboriginal and Torres Strait Islander PHC organisations to identify, implement, and evaluate dementia safeguarding practice and service improvements on a broader scale.

Abstract Background Aboriginal people in the Northern Territory (NT) suffer the heaviest burden of kidney failure in Australia with most living in remote areas at time of dialysis commencement. As there are few dialysis services in remote areas, many Aboriginal people are required to relocate often permanently, to access treatment. Missing dialysis treatments is not uncommon amongst Aboriginal patients but the relationship between location of dialysis service and dialysis attendance (and subsequent hospital use) has not been explored to date. Aim To examine the relationships between location of dialysis service, dialysis attendance patterns and downstream health service use (overnight hospital admissions, emergency department presentations) among Aboriginal patients in the NT. Methods Using linked hospital and dialysis registry datasets we analysed health service activity for 896 Aboriginal maintenance dialysis patients in the NT between 2008 and 2014. Multivariate linear regression and negative binomial regression analyses explored the associations between dialysis location, dialysis attendance and health service use. Results We found missing two or more dialysis treatments per month was more likely for Aboriginal people attending urban services and this was associated with a two-fold increase in the rate of hospital admissions and more than three-fold increase in ED presentations. However, we found higher dialysis attendance and lower health service utilisation for those receiving care in rural and remote settings. When adjusted for age, time on dialysis, region, comorbidities and residence pre-treatment, among Aboriginal people from remote areas, those dialysing in remote areas had lower rates of hospitalisations (IRR 0.56; P

Abstract Background The effectiveness of erythropoiesis-stimulating agents, which are the main stay of managing anaemia of chronic kidney disease (CKD), is largely dependent on adequate body iron stores. The iron stores are determined by the levels of serum ferritin concentration and transferrin saturation. These two surrogate markers of iron stores are used to guide iron replacement therapy. Most Aboriginal and/or Torres Islander Australians of the Northern Territory (herein respectfully referred to as First Nations Australians) with end-stage kidney disease have ferritin levels higher than current guideline recommendations for iron therapy. There is no clear evidence to guide safe and effective treatment with iron in these patients. We aim to assess the impact of intravenous iron treatment on all-cause death and hospitalisation with a principal diagnosis of all-cause infection in First Nations patients on haemodialysis with anaemia, high ferritin levels and low transferrin saturation Methods In a prospective open-label blinded endpoint randomised controlled trial, a total of 576 participants on maintenance haemodialysis with high ferritin (> 700 μg/L and ≤ 2000 μg/L) and low transferrin saturation (

Abstract Background While web conferencing technologies are being widely used in communication and collaboration, their uptake in conducting research field work has been relatively slow. The benefits that these technologies offer researchers for engaging with hard-to-reach populations are beginning to be recognised, however, the acceptability and feasibility of using web conferencing technology to engage Aboriginal and Torres Strait Islander young people in research is unknown. Objective This study aims to evaluate whether the use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research is an acceptable and feasible alternative to conventional face-to-face methods. Methods Aboriginal and Torres Strait Islander young people aged between 18 and 24 years were recruited via emails, flyers and snowballing to participate in an Online Yarning Circle (OYC) about wellbeing conducted via web conferencing. Five young Aboriginal and Torres Strait Islander Australians were trained as peer facilitators and each conducted one or more OYCs with support from an experienced Aboriginal and Torres Strait Islander researcher. The OYCs were recorded and the researchers conducted post-OYC interviews with the facilitators. OYC recordings, facilitator interviews and researchers’ reflections about the method were analysed to assess acceptability and feasibility for use with this population. Results 11 OYCs were conducted with 21 participants. The evaluation focused on (a) acceptability of the method for participants and facilitators and (b) feasibility of data collection method and procedures for use in research. Our evaluation revealed good acceptability and feasibility of the method, with only minor challenges experienced, which were predominantly logistical in nature and related to scheduling, obtaining documentation of consent, and technical issues. These challenges were offset by the greater control over the level of engagement that was comfortable for individual participants and the greater ease with which they felt they could withdraw from participating. This shift in the traditional researcher-participant power dynamic was recognised by both participants and peer facilitators and was regarded as a support for Aboriginal and Torres Strait Islander young people’s participation in research. Conclusions The use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research offers an acceptable and feasible alternative to face-to-face research methods. The benefits conferred by these technologies associated with yielding greater control and power to the research participant has broad relevance to research with marginalised populations.

Abstract Background In hospitals globally, patient centred communication is difficult to practice, and interpreters are underused. Low uptake of interpreters is commonly attributed to limited interpreter availability, time constraints and that interpreter-medicated communication in healthcare is an aberration. In Australia’s Northern Territory at Royal Darwin Hospital, it is estimated around 50% of Aboriginal patients would benefit from an interpreter, yet approximately 17% get access. Recognising this contributes to a culturally unsafe system, Royal Darwin Hospital and the NT Aboriginal Interpreter Service embedded interpreters in a renal team during medical ward rounds for 4 weeks in 2019. This paper explores the attitudinal and behavioural changes that occurred amongst non-Indigenous doctors and Aboriginal language interpreters during the pilot. Methods This pilot was part of a larger Participatory Action Research study examining strategies to achieve culturally safe communication at Royal Darwin Hospital. Two Yolŋu and two Tiwi language interpreters were embedded in a team of renal doctors. Data sources included interviews with doctors, interpreters, and an interpreter trainer; reflective journals by doctors; and researcher field notes. Inductive thematic analysis, guided by critical theory, was conducted. Results Before the pilot, frustrated doctors unable to communicate effectively with Aboriginal language speaking patients acknowledged their personal limitations and criticised hospital systems that prioritized perceived efficiency over interpreter access. During the pilot, knowledge of Aboriginal cultures improved and doctors adapted their work routines including lengthening the duration of bed side consults. Furthermore, attitudes towards culturally safe communication in the hospital changed: doctors recognised the limitations of clinically focussed communication and began prioritising patient needs and interpreters who previously felt unwelcome within the hospital reported feeling valued as skilled professionals. Despite these benefits, resistance to interpreter use remained amongst some members of the multi-disciplinary team. Conclusions Embedding Aboriginal interpreters in a hospital renal team which services predominantly Aboriginal peoples resulted in the delivery of culturally competent care. By working with interpreters, non-Indigenous doctors were prompted to reflect on their attitudes which deepened their critical consciousness resulting in behaviour change. Scale up of learnings from this pilot to broader implementation in the health service is the current focus of ongoing implementation research.

Abstract Background Globally, interpreters are underused by health providers in hospitals, despite 40 years of evidence documenting benefits to both patients and providers. At Royal Darwin Hospital, in Australia’s Northern Territory, 60-90% of patients are Aboriginal, and 60% speak an Aboriginal language, but only approximately 17% access an interpreter. Recognising this system failure, the NT Aboriginal Interpreter Service and Royal Darwin Hospital piloted a new model with interpreters embedded in a renal team during medical ward rounds for 4 weeks in 2019. Methods This research was embedded in a larger Participatory Action Research study examining cultural safety and communication at Royal Darwin Hospital. Six Aboriginal language speaking patients (five Yolŋu and one Tiwi), three non-Indigenous doctors and five Aboriginal interpreter staff were purposefully sampled. Data sources included participant interviews conducted in either the patient’s language or English, researcher field notes from shadowing doctors, doctors’ reflective journals, interpreter job logs and patient language lists. Inductive narrative analysis, guided by critical theory and Aboriginal knowledges, was conducted. Results The hospital experience of Yolŋu and Tiwi participants was transformed through consistent access to interpreters who enabled patients to express their clinical and non-clinical needs. Aboriginal language-speaking patients experienced a transformation to culturally safe care. After initially reporting feeling “stuck” and disempowered when forced to communicate in English, participants reported feeling satisfied with their care and empowered by consistent access to the trusted interpreters, who shared their culture and worldviews. Interpreters also enabled providers to listen to concerns and priorities expressed by patients, which resulted in holistic care to address social determinants of health. This improved patient trajectories and reduced self-discharge rates. Conclusions A culturally unsafe system which restricted people’s ability to receive equitable healthcare in their first language was overturned by embedding interpreters in a renal medical team. This research is the first to demonstrate the importance of consistent interpreter use for providing culturally safe care for Aboriginal patients in Australia.

Plain language summary Most people requiring ongoing treatment for end-stage kidney disease in the Northern Territory (NT) identify as Aboriginal with the majority residing in areas classified as remote or very remote. Unlike other jurisdictions in Australia, haemodialysis in a satellite unit is the most common form of treatment. However, there is a geographic mismatch between demand and service provision, with services centralised in urban areas. Patients and communities have long advocated for services at or closer to home, maintaining that the consequences of relocation and dislocation have far reaching health, psychosocial and economic ramifications. We analysed retrospective hospital data for 995 maintenance dialysis patients, stratified by the model of care they received in urban, rural and remote locations. Using cost weights attributed to diagnosis codes, we costed hospital admissions, emergency department presentations and maintenance dialysis attendances, to provide a mean total health service cost/patient/year for each model of care. We found that urban services were associated with low observed maintenance dialysis and high hospital costs, but the inverse was true for remote and very remote models. Remote models had high maintenance dialysis costs (due to expense of remote service delivery and good dialysis attendance) but low hospital usage and costs. When adjusted for other variables such as age, dialysis vintage and comorbidities, lower total hospital costs were associated with rural and remote service provision. In an environment of escalating demand and constrained budgets, this study underlines the need for policy decisions to consider the full cost consequences of different dialysis service models.

Abstract Background Almost all Aboriginal children in remote communities have persistent bilateral otitis media affecting hearing and learning throughout early childhood and school years, with consequences for social and educational outcomes, and later employment opportunities. Current primary health care and specialist services do not have the resources to meet the complex needs of these children. Method/design This stepped-wedge cluster randomised trial will allocate 18 communities to one of five 6-monthly intervention start dates. Stratification will be by region and population size. The intervention (Hearing for Learning Initiative, HfLI) consists of six 20-h weeks of training (delivered over 3 months) that includes Certificate II in Aboriginal Primary Health Care (3 modules) and competencies in ear and hearing data collection (otoscopy, tympanometry and hearScreen), plus 3 weeks of assisted integration into the health service, then part-time employment as Ear Health Facilitators to the end of the trial. Unblinding will occur 6 months prior to each allocated start date, to allow Community Reference Groups to be involved in co-design of the HfLI implementation in their community. Relevant health service data will be extracted 6-monthly from all 18 communities. The primary outcome is the difference in proportion of children (0 to 16 years of age) who have at least one ear assessment (diagnosis) documented in their medical record within each 6-month period, compared to control periods (no HfLI). Secondary outcomes include data on sustainability, adherence to evidence-based clinical guidelines for otitis media, including follow-up and specialist referrals, and school attendance. Structured interviews with staff working in health and education services, Ear Health Trainees, Ear Health Facilitators and families will assess process outcomes and the HfLI broader impact. Discussion The impact of training and employment of Ear Health Facilitators on service enhancement will inform the health, education and employment sectors about effectiveness of skills and job creation that empowers community members to contribute to addressing issues of local importance, in this instance ear and hearing health of children. Trial registration ClinicalTrials.gov NCT03916029 . Registered on 16 April 2019.

Introduction: Caregivers are essential for the health, safety, and independence of many patients and incur financial and personal cost in this role, including increased burden and lower quality of life (QOL) compared to the general population. Extended-hours hemodialysis may be the preference of some patients, but little is known about its effects on caregivers. Methods: Forty caregivers of participants of the ACTIVE Dialysis trial, who were randomized to 12 months extended (median 24 hours/wk) or standard (12 hours/wk) hemodialysis, were included. Utility-based QOL was measured by EuroQOL–5 Dimension–3 Level (EQ-5D-3L) and Short Form–6 Dimensions (SF-6D) and health-related QOL (HRQOL) was measured by the 36-Item Short Form Health Survey (SF-36) physical component summary (PCS) and mental component summary (MCS) and the Personal Wellbeing Index (PWI) at enrolment and then every 3 months until the end of the study. Results: At baseline, utility-based QOL and HRQOL were similar in both groups. At follow-up, caregivers of people randomized to extended-hours dialysis experienced a greater decrease in utility-based QOL measured by EQ-5D-3L compared with caregivers of people randomized to standard hours (–0.18±0.30 vs. –0.02±0.16, P = 0.04). There were no differences between extended- and standard-hours groups in mean change in SF-6D (0.03±0.12 vs. –0.04±0.1, P = 0.8), PCS (–1.2±9.8 vs. –5.6±9.8, P = 0.2), MCS (–4.1±11.2 vs. –0.5±7.1, P = 0.4), and PWI (2.3±17.6 vs. 0.00±20.4, P = 0.9). Conclusion: Poorer utility-based QOL, as measured by the EQ-5D-3L, was observed in caregivers of patients receiving extended-hours hemodialysis in this small study. Though the findings are exploratory, the possibility that mode of dialysis delivery negatively impacts on caregivers supports the prioritization of research on burden and impact of service delivery in this population.

Abstract Background End stage kidney disease (ESKD) is associated with many losses, subsequently impacting mental wellbeing. Few studies have investigated the efficacy of psychosocial interventions for people with ESKD and none exist for Indigenous people, a population in which the ESKD burden is especially high. Methods This three-arm, waitlist, single-blind randomised controlled trial examined efficacy of the Stay Strong App in improving psychological distress (Kessler distress scale; K10), depressive symptoms (adapted Patient Health Questionnaire; PHQ-9), quality of life (EuroQoL; EQ. 5D) and dialysis adherence among Indigenous Australians undergoing haemodialysis in central and northern Australia (Alice Springs and Darwin), with follow up over two 3-month periods. Effects of immediate AIMhi Stay Strong App treatment were compared with those from a contact control app (The Hep B Story) and treatment as usual (TAU). Control conditions received the Stay Strong intervention after 3 months. Results Primary analyses of the full sample (N = 156) showed statistically significant decreases in K10 and PHQ-9 scores at 3 months for the Hep B Story but not for the Stay Strong app or TAU. Restricting the sample to those with moderate to severe symptoms of distress or depression (K10 > =25 or PHQ-9 > =10) showed significant decreases in K10 and PHQ-9 scores for both Stay Strong and Hep B Story. No significant differences were observed for the EQ-5D or dialysis attendance. Conclusions Findings suggest that talking to people about their wellbeing and providing information relevant to kidney health using culturally adapted, locally relevant apps improve the wellbeing of people on dialysis. Further research is required to replicate these findings and identify active intervention components. Trial registration ACTRN12617000249358 ; 17/02/2017.

Abstract Background Associations between kidney disease and periodontal disease are not well documented among Aboriginal people of Australia. The purpose of this investigation was to report and compare demographic, oral health, anthropometric and systemic health status of Aboriginal Australians with kidney disease and to compare against relevant Aboriginal Australians and Australian population estimates. This provides much needed evidence to inform dental health service provision policies for Aboriginal Australians with kidney disease. Methods Sample frequencies and means were assessed in adults represented in six datasets including: (1) 102 Aboriginal Australians with kidney disease residing in Central Australia who participated in a detailed oral health assessment; (2) 312 Aboriginal participants of the Northern Territory’s PerioCardio study; (3) weighted estimates from 4775 participants from Australia’s National Survey of Adult Oral Health (NSAOH); (4) Australian 2016 Census (all Australians); (5) National Health Survey 2017–2018 (all Australians) and; (6) Australian Health Survey: Biomedical Results for Chronic Diseases, 2011–2012 (all Australians). Oral health status was described by periodontal disease and experience of dental caries (tooth decay). Statistically significant differences were determined via non-overlapping 95% confidence intervals. Results Aboriginal Australians with kidney disease were significantly older, less likely to have a tertiary qualification or be employed compared with both PerioCardio study counterparts and NSAOH participants. Severe periodontitis was found in 54.3% of Aboriginal Australians with kidney disease, almost 20 times the 2.8% reported in NSAOH. A higher proportion of Aboriginal Australians with kidney disease had teeth with untreated caries and fewer dental restorations when compared to NSAOH participants. The extent of periodontal attachment loss and periodontal pocketing among Aboriginal Australians with kidney disease (51.0%, 21.4% respectively) was several magnitudes greater than PerioCardio study (22.0%, 12.3% respectively) and NSAOH (5.4%, 1.3% respectively) estimates. Conclusions Aboriginal Australians with kidney disease exhibited more indicators of poorer oral health than both the general Australian population and a general Aboriginal population from Australia’s Northern Territory. It is imperative that management of oral health among Aboriginal Australians with kidney disease be included as part of their ongoing medical care.

Abstract Objective: To examine the supply of smoking cessation medicines to Aboriginal and Torres Strait Islander smokers compared to non‐Indigenous smokers across Australia. Methods: We analysed the total number of smoking cessation prescriptions dispensed over three years through the Pharmaceutical Benefits Scheme (PBS) compared to those supplied nationally through the Closing the Gap (CTG) measure and also in the Northern Territory through the Remote Area Aboriginal Health Service (RAAHS) program. Results: Aboriginal and Torres Strait Islander smokers were supplied with fewer smoking cessation medicines per smoker under the CTG measure compared to non‐Indigenous smokers under general PBS benefits. Supply of medicines though the RAAHS program complicated the use of CTG data where higher proportions of Aboriginal and Torres Strait Islander people live in remote areas and use of the CTG measure is lower. Conclusions: Fewer smoking cessation medicines are being prescribed and then dispensed to Aboriginal and Torres Strait Islander smokers than to non‐Indigenous smokers. Implications for public health: CTG and RAAHS data may be useful to monitor and evaluate the effectiveness of interventions to improve the use of smoking cessation medicines by Aboriginal and Torres Strait Islander smokers. However, there are limitations and current obstacles to accessing RAAHS data would need to be removed.

Aboriginal and Torres Strait Islander Australians (Indigenous Australians) suffer some of the highest rates of chronic kidney disease (CKD) in the world. Among Indigenous Australians in remote areas of the Northern Territory, prevalence rates for renal replacement therapy (RRT) are up to 30 times higher than national prevalence. Anemia among patients with CKD is a common complication. Iron deficiency is one of the major causes. Iron deficiency is also one of the key causes of poor response to the mainstay of anemia therapy with erythropoiesis-stimulating agents (ESAs). Therefore, the effective management of anemia in people with CKD is largely dependent on effective identification and correction of iron deficiency. The current identification of iron deficiency in routine clinical practice is dependent on 2 surrogate markers of iron status: serum ferritin concentration and transferrin saturation (TSAT). However, questions exist regarding the use of serum ferritin concentration in people with CKD because it is an acute-phase reactant that can be raised in the context of acute and chronic inflammation. Serum ferritin concentration among Indigenous Australians receiving RRT is often markedly elevated and falls outside reference ranges within most national and international guidelines for iron therapy for people with CKD. This review explores published data on the challenges of managing anemia in Indigenous people with CKD and the need for future research on the efficacy and safety of treatment of anemia of CKD in patients with high ferritin and evidence iron deficiency.

Abstract Background Determination of risks for chronic kidney disease (CKD) progression could improve strategies to reduce progression to ESKD. The eGFR Study recruited a cohort of adult Aboriginal and Torres Strait Islander people (Indigenous Australians) from Northern Queensland, Northern Territory and Western Australia, aiming to address the heavy CKD burden experienced within these communities. Methods Using data from the eGFR study, we explored the association of baseline liver function tests (LFTs) (alanine aminotransferase (ALT), alkaline phosphatase (ALP), gamma-glutamyl transpeptidase (GGT), bilirubin and albumin) and full blood count (FBC) indices (white blood cell and red blood cell counts and haemoglobin) with annual eGFR decline and renal outcomes (first of 30% decline in eGFR with a follow-up eGFR

Objective: To investigate long-term adherence to guideline-recommended cardioprotective medications following hospitalization for an acute myocardial infarction (AMI), and identify characteristics associated with adherence.Methods: An Australian population-based cohort study was used to identify participants who had their first AMI between 2006 and 2014 and were alive after 12 months. Linked routinely collected hospital, and prescription medication claims data was used to study adherence over time. Predictors and rates of adherence to both lipid-lowering medication and renin-angiotensin system blockade at 12 months post-AMI was assessed.Results: 14,200 people (mean age 69.9 years, 38.7% female) were included in our analysis. At 12 months post-AMI, 29.5% (95% CI: 28.8–30.3%) of people were adherent to both classes of medication. Individuals receiving treatment with both lipid-lowering medication and renin-angiotensin system blockade during the 6 months prior to their AMI were over 9 times more likely to be adherent to both medications at 12 months post-AMI (66.2% 95% CI: 64.8–67.5%) compared to those with no prior medication use (treatment naïve) (7.1%, 95% CI: 6.4–7.9%). Prior cardiovascular treatment was the strongest predictor of long-term adherence even after adjusting for age, sex, education and income.Conclusions: Despite efforts to improve long-term medication adherence in patients who have experienced an acute coronary event, considerable gaps remain. Of particular concern are people who are commencing guideline-recommended cardioprotective medication at the time of their AMI. The relationship between prior cardiovascular treatments and post AMI adherence offers insight into the support needs for the patient. Health care intervention strategies, strengthened by enabling policies, are needed to provide support to patients through the initial months following their AMI.

Abstract Background Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences. Methods A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure. Discussion The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.

Abstract Background Chronic diseases are the leading contributor to the excess morbidity and mortality burden experienced by Aboriginal and Torres Strait Islander (hereafter, respectfully, Indigenous) people, compared to their non-Indigenous counterparts. The Home-based Outreach case Management of chronic disease Exploratory (HOME) Study provided person-centred, multidisciplinary care for Indigenous people with chronic disease. This model of care, aligned to Indigenous peoples’ conceptions of health and wellbeing, was integrated within an urban Indigenous primary health care service. We aimed to determine the impact of this model of care on participants’ health and wellbeing at 12 months. Methods HOME Study participants were Indigenous, regular patients of the primary health care service, with a diagnosis of at least one chronic disease, and complex health and social care needs. Data were collected directly from participants and from their medical records at baseline, and 3, 6 and 12 months thereafter. Variables included self-rated health status, depression, utilisation of health services, and key clinical outcomes. Participants’ baseline characteristics were described using frequencies and percentages. Generalized estimating equation (GEE) models were employed to evaluate participant attrition and changes in outcome measures over time. Results 60 participants were enrolled into the study and 37 (62%) completed the 12-month assessment. After receiving outreach case management for 12 months, 73% of participants had good, very good or excellent self-rated health status compared with 33% at baseline (p

Abstract Objective Periodontal disease is associated with chronic kidney disease (CKD), with both conditions being highly prevalent among Australia’s Aboriginal population. This paper reflects on the lessons learned following implementation of a periodontal intervention in the Central Australian region of the Northern Territory among Aboriginal adults with CKD. Results Between Oct 2016 and May 2019, research staff recruited 102 eligible participants. This was far below the anticipated recruitment rate. The challenges faced, and lessons learned, were conceptualised into five specific domains. These included: (1) insufficient engagement with the Aboriginal community and Aboriginal community-controlled organisations; (2) an under-appreciation of the existing and competing patient commitments with respect to general health and wellbeing, and medical treatment to enable all study commitments; (3) most study staff employed from outside the region; (4) potential participants not having the required number of teeth; (5) invasive intervention that involved travel to, and time at, a dental clinic. A more feasible research model, which addresses the divergent needs of participants, communities and service partners is required. This type of approach, with sufficient time and resourcing to ensure ongoing engagement, partnership and collaboration in co-design throughout the conduct of research, challenges current models of competitive, national research funding.

Abstract Background Aboriginal cultural awareness training aims to build a culturally responsive workforce, however research has found the training has limited impact on the health professional’s ability to provide culturally safe care. This study examined cultural awareness training feedback from healthcare professionals working with high Aboriginal patient caseloads in the Top End of the Northern Territory of Australia. The aim of the research was to assess the perception of training and the potential for expansion to better meet workforce needs. Methods Audit and qualitative thematic analysis of cultural awareness training evaluation forms completed by course participants between March and October 2018. Course participants ranked seven teaching domains using five-point Likert scales (maximum summary score 35 points) and provided free-text feedback. Data were analysed using the Framework Method and assessed against Kirkpatrick’s training evaluation model. Cultural safety and decolonising philosophies shaped the approach. Results 621 participants attended 27 ACAP sessions during the study period. Evaluation forms were completed by 596 (96%). The mean overall assessment score provided was 34/35 points (standard deviation 1.0, range 31-35) indicating high levels of participant satisfaction. Analysis of 683 free text comments found participants wanted more cultural education, designed and delivered by local people, which provides an opportunity to consciously explore both Aboriginal and non-Aboriginal cultures (including self-reflection). Regarding the expansion of cultural education, four major areas requiring specific attention were identified: communication, kinship, history and professional relevance. A strength of this training was the authentic personal stories shared by local Aboriginal cultural educators, reflecting community experiences and attitudes. Criticism of the current model included that too much information was delivered in one day. Conclusions Healthcare providers found cultural awareness training to be an invaluable entry point. Cultural education which elevates the Aboriginal health user’s experience and provides health professionals with an opportunity for critical self-reflection and practical solutions for common cross-cultural clinical encounters may improve the delivery of culturally safe care. We conclude that revised models of cultural education should be developed, tested and evaluated. This requires institutional support, and recognition that cultural education can contribute to addressing systemic racism.

Abstract Background Chronic kidney disease is an increasingly common health problem for Aboriginal and Torres Strait Islander people. It is associated with multiple concurrent psychosocial stressors frequently resulting in negative impacts on emotional and social wellbeing. There is need for well-designed intervention studies to provide evidence of effective treatment for comorbid depression or other mental illness in this setting. Attention to early phase piloting and development work is recommended when testing complex interventions. This paper documents feasibility testing and adaptation of an existing culturally responsive brief wellbeing intervention, the Stay Strong App, and three commonly used wellbeing outcome measures, in preparation for a clinical trial testing effectiveness of the intervention. Methods The Stay Strong App, which has not been used in the setting of Chronic Kidney Disease before, is reviewed and adapted for people with comorbid wellbeing concerns through expert consensus between research team and an Expert Panel. The outcome measures (Kessler 10, Patient Health Questionnaire 9, and EuroQoL) are valid, reliable, and commonly used tools to assess various aspects of wellbeing, which have also not been used in this context before. Feasibility and acceptability are examined and developed through 3 stages: Pilot testing in a purposive sample of five haemodialysis patients and carers; translation of outcome measures through collaboration between the Aboriginal Interpreter Service, Aboriginal and Torres Strait Islander research officers and the research team; and conversion of translated outcome measures to electronic format. Results Research team and expert panel consensus led to adaptation of the Stay Strong App for renal patients through selective revision of words and images. Pilot testing identified challenges in delivery of the wellbeing measures leading to word changes and additional prompts, integration of audio translations in 11 local Indigenous languages within an interactive Outcome Measures App, and related research protocol changes. Conclusion Modelling the complex intervention prior to full-scale testing provided important information about the design of both the outcome measures and the intervention. These changes are likely to better support success in conduct of the clinical trial and future implementation of the intervention in clinical settings.

Abstract Background Incidence of end stage kidney disease (ESKD) for Indigenous Australians is especially high in remote and very remote areas of Australia (18 and 20 times the rate of comparable non-Indigenous people). Relocating away from family and country for treatment, adjusting to life with a chronic condition and time lost to dialysis cause grief and sadness which have immense impact on quality of life and challenges treatment adherence. We describe the first randomised controlled trial to address both chronic disease and mental health in Indigenous people with ESKD, which is the first to test the effectiveness of a culturally adapted e-mental health intervention in this population. It builds on an existing program of mental health research with demonstrated efficacy – the Aboriginal and Islander Mental Health Initiative (AIMhi) – to test the newly developed electronic motivational care planning (MCP) therapy – the AIMhi Stay Strong App. Methods This is a 3-arm, waitlist, single-blind randomised controlled trial testing the efficacy of the Stay Strong App in improving psychological distress, depressive symptoms, quality of life and treatment adherence among Indigenous clients undergoing haemodialysis for ESKD in Alice Springs and Darwin with follow up over two periods of 3 months (total of 6 months observation). The study compares the efficacy of MCP using the AIMhi Stay Strong App with two control groups (control app intervention and treatment as usual) on participant-reported psychological distress (the primary outcome) using the Kessler Distress Scale (K10); depressive symptoms using the adapted Patient Health Questionnaire (PHQ-9); quality of life using the EuroQoL instrument (EQ5D) and adherence to dialysis treatment planning through file audit. Participants are randomised to receive MCP either at baseline (early treatment) or after 3 months (delayed treatment). The study also examines the cost effectiveness of this therapy in this setting through examination of health care service utilisation across groups during the first 3 months. Discussion This project will contribute much needed evidence on the efficacy of an electronic wellbeing intervention for Indigenous people with ESKD – a group in which distress is likely to be unacceptably high, yet relatively untreated. Trial registration Australian New Zealand Clinical Trial Registry; ACTRN12617000249358; Date registered: 17/02/2017.

Aim: To describe and reflect on an Aboriginal researcher’s experience of vicarious trauma arising from a qualitative study of Aboriginal and Torres Strait Islander women with chronic disease. Methods: In-depth semistructured interviews with thematic analysis were undertaken to explore the psychosocial factors experienced by Aboriginal and Torres Strait Islander women as they managed their chronic disease. An ‘Indigenous women’s standpoint theory’ approach was adopted to frame discussion. This approach gives strength and power to the voice of Aboriginal and Torres Strait Islander women and their diverse cultural lived experiences. The raw and often brutal realities this approach exposed had a triggering impact on the Aboriginal team member for whom these realities were familiar. Interviews were conducted with participants from four Aboriginal Medical Services from urban, rural and remote Australia. Analysis of the interviews, and reflection regarding the researcher’s experiences, occurred within the context of a multidisciplinary team. Participant selection for the interview study was purposive. Seventy-two participants were selected for this study. The duration of the study was 2 years, and it was undertaken between March and December 2014, and finalised in December 2016. Results: In exploring how Aboriginal and Torres Strait Islander women managed their own health and wellbeing, compelling stories of trauma, domestic violence and generational incarceration were shared with the researcher. Hearing and re-living some of these overwhelming experiences left her feeling isolated and distressed. These compelling stories contributed to her experience of vicarious trauma. Conclusion: When Aboriginal and Torres Strait Islander researchers conduct research in Indigenous communities, we should monitor, prepare for and provide appropriate care and support to researchers to address the potential for vicarious trauma. These considerations are paramount if we are to build the capacity of Indigenous and non-Indigenous researchers to conduct Indigenous health research.

Aims: To use linked routinely-collected health data to estimate diabetes prevalence and incidence in an Australian cohort of adults aged ≥45 years, and examine risk factors associated with incident disease. Research design and methods: The EXamining ouTcomEs in chroNic Disease in the 45 and Up Study (EXTEND45) Study is a linked data study that combines baseline questionnaire responses from the population-based 45 and Up Study (2006–2009, n = 267,153) with multiple routinely-collected health databases up to December 2014. Among participants with ≥1 linked result for any laboratory test, diabetes status was determined from multiple data sources according to standard biochemical criteria, use of glucose-lowering medication or self-report, and the prevalence and incidence rate calculated. Independent risk factors of incident diabetes were examined using multivariable Cox regression. Results: Among 152,169 45 and Up Study participants with ≥1 linked laboratory result in the EXTEND45 database (mean age 63.0 years; 54.9% female), diabetes prevalence was 10.8% (95% confidence interval [CI] 10.6%–10.9%). Incident disease in those without diabetes at baseline (n = 135,810; mean age 62.5 years; 56.1% female) was 10.0 per 1,000 person-years (95% CI 9.8–10.2). In all age groups, diabetes incidence was lower in women compared to men, an association that persisted in the fully adjusted analyses. Other independent risk factors of diabetes were older age, being born outside of Australia (with the highest rate of 19.2 per 1,000 person-years observed in people born in South and Central Asia), lower education status, lower annual household income, residence in a major city, family history of diabetes, personal history of cardiovascular disease or hypertension, higher body mass index, smoking and long sleeping hours. Conclusions: Our study represents an efficient approach to assessing diabetes frequency and its risk factors in the community. The infrastructure provided by the EXTEND45 Study will be useful for diabetes surveillance and examining other important clinical and epidemiological questions.

Introduction: The impact of chronic kidney disease (CKD) on income is unclear. We sought to determine whether CKD severity, serious adverse events, and CKD progression affected household income. Methods: Analyses were undertaken in a prospective cohort of adults with moderate-to-severe CKD in the Study of Heart and Renal Protection (SHARP), with household income information available at baseline screening and study end. Logistic regressions, adjusted for sociodemographic characteristics, smoking, and prior diseases at baseline, estimated associations during the 5-year follow-up, among (i) baseline CKD severity, (ii) incident nonfatal serious adverse events (vascular or cancer), and (iii) CKD treatment modality (predialysis, dialysis, or transplanted) at study end and the outcome “fall into relative poverty.” This was defined as household income

Abstract Background Most estimates for End Stage Kidney Disease (ESKD) prevalence and incidence are based on renal replacement therapy (RRT) registers. However, not all people with ESKD will commence RRT and estimates based only on RRT registry data will underestimate the true burden of ESKD in the community. This study estimates the total number of Northern Territory (NT) residents with ESKD including: those receiving RRT, those diagnosed but not receiving RRT and an estimate of “undiagnosed” cases. Methods Four data sources were used to identify NT residents with a diagnosis of ESKD: public hospital admissions, Australia and New Zealand Dialysis and Transplant Registry registrations, death registrations and, for the Aboriginal population only, electronic primary care records. Three data sources contained information recorded between 1 July 2008 and 31 December 2013, death registration data extended to 31 December 2014 to capture 2013 prevalent cases. A capture–recapture method was used to estimate both diagnosed and undiagnosed cases by making use of probability patterns of overlapping multiple data sources. Results In 2013, the estimated ESKD prevalence in the NT Aboriginal population was 11.01 (95% confidence interval (CI) 10.24–11.78) per 1000, and 0.90 (95% CI 0.76–1.05) per 1000 in the NT non-Aboriginal population. The age-adjusted rates were 17.97 (95% CI 17.82–18.11) and 1.07 (95% CI 1.05–1.09) per 1000 in the NT Aboriginal and non-Aboriginal populations respectively. The proportion of individuals receiving RRT was 71.4% of Aboriginal and 75.5% of non-Aboriginal prevalent ESKD cases. The age-adjusted ESKD incidence was also greater for the Aboriginal (5.26 (95% CI 4.44–6.08) per 1000 population) than non-Aboriginal population (0.36 (95% CI 0.25–0.47) per 1000). Conclusion This study provides comprehensive estimates of the burden of ESKD including those cases that are not identified in relevant health data sources. The results are important for informing strategies to reduce the total burden of ESKD and to manage the potential unmet demand, particularly from comparatively young Aboriginal patients who may be suitable for RRT but do not currently access the services for social, geographic or cultural reasons.

Abstract Background Indigenous Australians experience high rates of chronic conditions. It is often asserted Indigenous Australians have low adherence to medication; however there has not been a comprehensive examination of the evidence. This systematic literature review presents data from studies of Indigenous Australians on adherence rates and identifies supporting factors and impediments from the perspective of health professionals and patients. Methods Search strategies were used to identify literature in electronic databases and websites. The following databases were searched: Scopus, Medline, CINAHL Plus, PsycINFO, Academic Search Premier, Cochrane Library, Trove, Indigenous Health infonet and Grey Lit.org . Articles in English, reporting original data on adherence to long-term, self-administered medicines in Australia’s Indigenous populations were included. Data were extracted into a standard template and a quality assessment was undertaken. Results Forty-seven articles met inclusion criteria. Varied study methodologies prevented the use of meta-analysis. Key findings: health professionals believe adherence is a significant problem for Indigenous Australians; however, adherence rates are rarely measured. Health professionals and patients often reported the same barriers and facilitators, providing a framework for improvement. Conclusions There is no evidence that medication adherence amongst Indigenous Australians is lower than for the general population. Nevertheless, the heavy burden of morbidity and mortality faced by Indigenous Australians with chronic conditions could be alleviated by enhancing medication adherence. Some evidence supports strategies to improve adherence, including the use of dose administration aids. This evidence should be used by clinicians when prescribing, and to implement and evaluate programs using standard measures to quantify adherence, to drive improvement in health outcomes.

Abstract Background In Australia’s Northern Territory, most Aboriginal people primarily speak an Aboriginal language. Poor communication between healthcare providers and Aboriginal people results in adverse outcomes including death. This study aimed to identify remediable barriers to utilisation of Aboriginal Interpreter services at the Northern Territory’s tertiary hospital, which currently manages over 25,000 Aboriginal inpatients annually. Methods This is a multi-method study using key stakeholder discussions, medical file audit, bookings data from the Aboriginal Interpreter Service 2000–2015 and an online cross-sectional staff survey. The Donabedian framework was used to categorise findings into structure, process and outcome. Results Six key stakeholder meetings each with approximately 15 participants were conducted. A key structural barrier identified was lack of onsite interpreters. Interpreter bookings data revealed that only 7603 requests were made during the 15-year period, with completion of requests decreasing from 337/362 (93.1%) in 2003–4 to 649/831 (78.1%) in 2014–15 (p

Abstract Background Indigenous Australians suffer a disproportionate burden of end stage kidney disease (ESKD) but are significantly less likely to receive a transplant. This study explores Indigenous ESKD patients’ views on transplantation as a treatment option. Methods The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. An interview study, conducted in 2005–2006, elicited illness experience narratives from 146 Indigenous patients, including views on transplant. Interviews were conducted at 26 sites that collectively treat the majority of Indigenous ESKD patients. Key themes were identified via team consensus meetings, providing a flexible framework and focus for continued coding. Results Four inter-related themes were identified in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients experienced a range of communication difficulties and felt uninformed about transplant; family involvement in decision-making was constrained by inadequate information; and patients needed to negotiate cultural and social sensitivities around transplantation. Conclusions Indigenous ESKD patients demonstrated an intense interest in transplantation preferring deceased over living kidney donation. Patients believe transplant is the path most likely to support the re-establishment of their ‘normal’ family life. Patients described themselves as poorly informed; most had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients experienced multiple communication barriers that - taken together - undermine their engagement in treatment decision-making. Families and communities are disempowered because they also lack information to reach a shared understanding of transplantation. Cultural sensitivities associated with transplantation were described but these did not appear to constrain patients in making choices about their own health. Transplant units and local treatment providers should collaborate to develop user-friendly, culturally informed and region-specific patient education programs. Quality improvement cycles should underpin the development of national guidelines for patient education. Noting Indigenous patients’ intense interest in transplantation, and nephrologists’ concerns regarding poor transplant outcomes, research should prioritise exploring the predictors of transplant outcomes for Indigenous Australians.

Abstract Background In spite of bearing a heavier burden of death, disease and disability, there is mixed evidence as to whether Indigenous Australians utilise more or less healthcare services than other Australians given their elevated risk level. This study analyses the Medicare expenditure and its predictors in a cohort of Indigenous and non-Indigenous Australians at high risk of cardiovascular disease. Methods The healthcare expenditure of participants of the Kanyini Guidelines Adherence with the Polypill (GAP) pragmatic randomised controlled trial was modelled using linear regression methods. 535 adult (48% Indigenous) participants at high risk of cardiovascular disease (CVD) were recruited through 33 primary healthcare services (including 12 Aboriginal Medical Services) across Australia. Results There was no significant difference in the expenditure of Indigenous and non-Indigenous participants in non-remote areas following adjustment for individual characteristics. Indigenous individuals living in remote areas had lower MBS expenditure ($932 per year P

Abstract Background Australia’s Northern Territory (NT) has the country’s highest incidence and prevalence of kidney disease. Indigenous people from remote areas suffer the heaviest disease burden. Concerns regarding cost and sustainability limit the provision of dialysis treatments in remote areas and most Indigenous people requiring dialysis relocate to urban areas. However, this dislocation of people from their family, community and support networks may prove more costly when the broader health, societal and economic consequences for the individual, family and whole of government are considered. Methods The Dialysis Models of Care Study is a large cross organisation mixed methods study. It includes a retrospective (2000–2014) longitudinal data linkage study of two NT cohorts: Renal Cohort 1- comprising approximately 2000 adults who received dialysis and Renal Cohort 2- comprising approximately 400 children of those adults. Linkage of administrative data sets from the Australian and New Zealand Dialysis and Transplant Registry, NT Departments of Health, Housing and Education by a specialist third party (SA/NT Datalink) will enable extraction of activity, financial and outcome data. Interviews with patients, clinicians and service providers, using a snowball technique, will canvass relevant issues and assist in determining the full costs and impacts of the five most used dialysis Models of Care. Discussion The study uses a mixed methods approach to investigate the quantitative and qualitative dimensions of the full costs and outcomes associated with the choice of particular dialysis models of care for any given patient. The study includes a large data linkage component that for the first time links health, housing and education data to fully analyse and evaluate the impact on patients, their families and the broader community, resulting from the relocation of people for treatment. The study will generate a large amount of activity, financial and qualitative data that will investigate health costs less directly related to dialysis treatment, costs to government such as housing and/or education and the health, social and economic outcomes experienced by patients. This approach fills an evidence gap critical to health service planners.

Abstract Objective: Given the high prevalence of chronic disease, it is of concern that access to and sustained engagement with primary healthcare services by Aboriginal and Torres Strait Islander Australians is often far lower than would be expected. This study sought to explore ways in which relationships can support sustained engagement with healthcare services. Methods: Semi‐structured interviews were conducted with 126 Aboriginal and Torres Strait Islander participants with and without chronic disease and 97 Aboriginal and Torres Strait Islander and non‐Indigenous healthcare providers, healthcare service managers or administrative staff. Results: Our findings indicate that when faced with acute health issues, Aboriginal and Torres Strait Islander participants did prioritise care, provided that the service was both physically and emotionally welcoming. Trustworthiness of healthcare providers and strong relationships with patients were the most important factors for encouraging sustained engagement overtime. Conclusions: Responsibility for sustaining relationships does not rest solely with Aboriginal and Torres Strait Islander patients. Rather, healthcare providers need to commit to the process of building and maintaining relationships. Implications: First and foremost healthcare providers should take time to establish and then maintain relationships. Healthcare services can also contribute by ensuring facilities are welcoming for Aboriginal and Torres Strait Islander peoples.

Background: There are limited studies on the effects of statins on outcomes in the moderate chronic kidney disease (CKD) population and their trajectory to end-stage kidney disease. Objective: To examine the long-term effects of lipid-lowering therapy on all-cause mortality, cardiovascular morbidity, CKD progression, and socioeconomic well-being in Australian, New Zealand, and Malaysian SHARP (Study of Heart and Renal Protection) trial participants—a randomized controlled trial of a combination of simvastatin and ezetimibe, compared with placebo, for the reduction of cardiovascular events in moderate to severe CKD. Design: Protocol for an extended prospective observational follow-up. Setting: Australian, New Zealand, and Malaysian participating centers in patients with advanced CKD. Patients: All SHARP trial participants alive at the final study visit. Measurements: Primary outcomes were measured by participant self-report and verified by hospital administrative data. In addition, secondary outcomes were measured using a validated study questionnaire of health-related quality of life, a 56-item economic survey. Methods: Participants were followed up with alternating face-to-face visits and telephone calls on a 6-monthly basis until 5 years following their final SHARP Study visit. In addition, there were 6-monthly follow-up telephone calls in between these visits. Data linkage to health registries in Australia, New Zealand, and Malaysia was also performed. Results: The SHARP-Extended Review (SHARP-ER) cohort comprised 1136 SHARP participants with a median of 4.6 years of follow-up. Compared with all SHARP participants who originally participated in the Australian, New Zealand, and Malaysian regions, the SHARP-ER participants were younger (57.2 [48.3-66.4] vs 60.5 [50.3-70.7] years) with a lower proportion of men (61.5% vs 62.8%). There were a lower proportion of participants with hypertension (83.7% vs 85.0%) and diabetes (20.0% vs 23.5%). Limitations: As a long-term follow-up study, the surviving cohort of SHARP-ER is a selected group of the original study participants, which may limit the generalizability of the findings. Conclusion: The SHARP-ER study will contribute important evidence on the long-term outcomes of cholesterol-lowering therapy in patients with advanced CKD with a total of 10 years of follow-up. Novel analyses of the socioeconomic impact of CKD over time will guide resource allocation. Trial Registration: The SHARP trial was registered at ClinicalTrials.gov NCT00125593 and ISRCTN 54137607.

BACKGROUND:Arteriovenous fistulas (AVF) for haemodialysis often experience early thrombosis and maturation failure requiring intervention and/or central venous catheter (CVC) placement. This secondary and exploratory analysis of the FAVOURED study determined whether omega-3 fatty acids (fish oils) or aspirin affected AVF usability, intervention rates and CVC requirements. METHODS:In 567 adult participants planned for AVF creation, all were randomised to fish oil (4g/d) or placebo, and 406 to aspirin (100mg/d) or placebo, starting one day pre-surgery and continued for three months. Outcomes evaluated within 12 months included AVF intervention rates, CVC exposure, late dialysis suitability failure, and times to primary patency loss, abandonment and successful cannulation. RESULTS:Final analyses included 536 participants randomised to fish oil or placebo (mean age 55 years, 64% male, 45% diabetic) and 388 randomised to aspirin or placebo. Compared with placebo, fish oil reduced intervention rates (0.82 vs 1.14/1000 patient-days, incidence rate ratio [IRR] 0.72, 95% confidence interval [CI] 0.54-0.97), particularly interventions for acute thrombosis (0.09 vs 0.17/1000 patient-days, IRR 0.53, 95% CI 0.34-0.84). Aspirin significantly reduced rescue intervention rates (IRR 0.45, 95% CI 0.27-0.78). Neither agent significantly affected CVC exposure, late dialysis suitability failure or time to primary patency loss, AVF abandonment or successful cannulation. CONCLUSION:Although fish oil and low-dose aspirin given for 3 months reduced intervention rates in newly created AVF, they had no significant effects on CVC exposure, AVF usability and time to primary patency loss or access abandonment. Reduction in access interventions benefits patients, reduces costs and warrants further study.

BackgroundTo address guideline-practice gaps and improve management of patients with both diabetes and chronic kidney disease (CKD), we involved patients, health professionals and patient advocacy groups in the co-design and implementation of an integrated diabetes-kidney service.ObjectiveIn this study, we explored the experiences of patients and health-care providers, within this integrated diabetes and kidney service.Methods5 focus groups and 2 semi-structured interviews were conducted amongst attending patients, referring primary health professionals, and attending specialist health professionals. Maximal variation sampling was used for both patients and referring primary health professionals to ensure an equal representation of males and females, and patients of different CKD stages. All discussions were audiotaped and transcribed verbatim, before being thematically analysed independently by 2 researchers.ResultsThe mean age (SD) for specialist health professionals, primary care professionals and patients who participated was 45 (11), 44 (15) and 68 (5) years with men being 50%, 80% and 76% of the participants respectively. Key strengths of the diabetes and kidney service were noted to be better integration of care and a perception of improved health and management of health. Whilst some aspects of access such as time between referral and initial appointment and having fewer appointments improved, other aspects such as in-clinic waiting times and parking remained problematic. Specialist health professionals noted that health professional education could be improved. Patient self-management was also noted by to be an issue with some patients requesting more information and some health professionals expressing difficulty in empowering some patients.ConclusionsHealth professionals and patients reported that a co-designed integrated diabetes kidney service improved integration of care and improved health and management of health. However, some aspects of the process of care, health professional education and patient self-management remained challenging.

BackgroundAustralian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.AimTo describe the experiences of health care users of a large government kidney healthcare service provider.MethodsWithin a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions.ResultsClient characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function.ConclusionFour major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.

Objective. To determine the significance of high serum ferritin observed in Indigenous Australian patients on maintenance haemodialysis in the Northern Territory, we assessed the relationship between ferritin and transferrin saturation (TSAT) as measures of iron status and ferritin and C-reactive protein (CRP) as markers of inflammation. Methods. We performed a retrospective cohort analysis of data from adult patients (≥18 years) on maintenance haemodialysis (>3 months) from 2004 to 2011. Results. There were 1568 patients. The mean age was 53.9 (11.9) years. 1244 (79.3%) were Indigenous. 44.2% (n=693) were male. Indigenous patients were younger (mean age [52.3 (11.1) versus 57.4 (15.2), p

BACKGROUND:Multi-morbidity due to diabetes and chronic kidney disease (CKD) remains challenging for current health-systems, which focus on single diseases. As a first step toward health-care improvement, we explored the perspectives of patients and their carers on factors influencing the health-care of those with co-morbid diabetes and CKD. METHODS:In this qualitative study participants with co-morbid diabetes and CKD were purposively recruited using maximal variation sampling from 4 major tertiary health-services from 2 of Australia's largest cities. Separate focus groups were conducted for patients with CKD stages 3, 4 and 5. Findings were triangulated with semi-structured interviews of carers of patients. Discussions were transcribed verbatim and thematically analysed. RESULTS:Twelve focus groups with 58 participants and 8 semi-structured interviews of carers were conducted. Factors influencing health-care of co-morbid diabetes and CKD grouped into patient and health service level factors. Key patient level factors identified were patient self-management, socio-economic situation, and adverse experiences related to co-morbid diabetes and CKD and its treatment. Key health service level factors were prevention and awareness of co-morbid diabetes and CKD, poor continuity and coordination of care, patient and carer empowerment, access and poor recognition of psychological co-morbidity. Health-service level factors varied according to CKD stage with poor continuity and coordination of care and patient and carer empowerment emphasized by participants with CKD stage 4 and 5, and access and poor recognition of psychological co-morbidity emphasised by participants with CKD stage 5 and carers. CONCLUSIONS:According to patients and their carers the health-care of co-morbid diabetes and CKD may be improved via a preventive, patient-centred health-care model which promotes self-management and that has good access, continuity and coordination of care and identifies and manages psychological morbidity.