Costs and healthcare use of patients with chronic kidney disease in the Northern Territory, Australia.

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 < 0.001) compared to people in the at risk group without CKD. CONCLUSION: The total healthcare costs in advanced stages of CKD is high, even when patients are not on dialysis. There remains a need for effective primary prevention and early intervention strategies targeting CKD and related chronic conditions.

Developing an integrated clinical decision support system for the early identification and management of kidney disease-building cross-sectoral partnerships.

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.

Improving outcomes for hospitalised First Nations peoples though greater cultural safety and better communication: the Communicate Study Partnership study protocol.

BACKGROUND: The Communicate Study is a partnership project which aims to transform the culture of healthcare systems to achieve excellence in culturally safe care for First Nations people. It responds to the ongoing impact of colonisation which results in First Nations peoples experiencing adverse outcomes of hospitalisation in Australia's Northern Territory. In this setting, the majority of healthcare users are First Nations peoples, but the majority of healthcare providers are not. Our hypotheses are that strategies to ensure cultural safety can be effectively taught, systems can become culturally safe and that the provision of culturally safe healthcare in first languages will improve experiences and outcomes of hospitalisation. METHODS: We will implement a multicomponent intervention at three hospitals over 4 years. The main intervention components are as follows: cultural safety training called 'Ask the Specialist Plus' which incorporates a locally developed, purpose-built podcast, developing a community of practice in cultural safety and improving access to and uptake of Aboriginal language interpreters. Intervention components are informed by the 'behaviour change wheel' and address a supply-demand model for interpreters. The philosophical underpinnings are critical race theory, Freirean pedagogy and cultural safety. There are co-primary qualitative and quantitative outcome measures: cultural safety, as experienced by First Nations peoples at participating hospitals, and proportion of admitted First Nations patients who self-discharge. Qualitative measures of patient and provider experience, and patient-provider interactions, will be examined through interviews and observational data. Quantitative outcomes (documentation of language, uptake of interpreters (booked and completed), proportion of admissions ending in self-discharge, unplanned readmission, hospital length of stay, costs and cost benefits of interpreter use) will be measured using time-series analysis. Continuous quality improvement will use data in a participatory way to motivate change. Programme evaluation will assess Reach, Effectiveness, Adoption, Implementation and Maintenance ('RE-AIM'). DISCUSSION: The intervention components are innovative, sustainable and have been successfully piloted. Refinement and scale-up through this project have the potential to transform First Nations patients' experiences of care and health outcomes. TRIAL REGISTRATION: Registered with ClinicalTrials.gov Protocol Record 2008644.

Development and validation of algorithms to identify patients with chronic kidney disease and related chronic diseases across the Northern Territory, Australia.

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 < 60 ml/min/1.732, including renal replacement therapy) overall algorithm sensitivity was 93% (95%CI 89 to 96%) and specificity was 73% (95%CI 64 to 82%). For CKD defined as CKD stage 3a or higher (eGFR < 60 ml/min/1.732) algorithm sensitivity and specificity were 93% and 97% respectively. Among the CKD 1 to 5 staging algorithms, the CKD stage 5 algorithm was most accurate with > 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.

Design, effectiveness, and economic outcomes of contemporary chronic disease clinical decision support systems: a systematic review and meta-analysis.

OBJECTIVES: Electronic health record-based clinical decision support (CDS) has the potential to improve health outcomes. This systematic review investigates the design, effectiveness, and economic outcomes of CDS targeting several common chronic diseases. MATERIAL AND METHODS: We conducted a search in PubMed (Medline), EBSCOHOST (CINAHL, APA PsychInfo, EconLit), and Web of Science. We limited the search to studies from 2011 to 2021. Studies were included if the CDS was electronic health record-based and targeted one or more of the following chronic diseases: cardiovascular disease, diabetes, chronic kidney disease, hypertension, and hypercholesterolemia. Studies with effectiveness or economic outcomes were considered for inclusion, and a meta-analysis was conducted. RESULTS: The review included 76 studies with effectiveness outcomes and 9 with economic outcomes. Of the effectiveness studies, 63% described a positive outcome that favored the CDS intervention group. However, meta-analysis demonstrated that effect sizes were heterogenous and small, with limited clinical and statistical significance. Of the economic studies, most full economic evaluations (n = 5) used a modeled analysis approach. Cost-effectiveness of CDS varied widely between studies, with an estimated incremental cost-effectiveness ratio ranging between USD$2192 to USD$151 955 per QALY. CONCLUSION: We summarize contemporary chronic disease CDS designs and evaluation results. The effectiveness and cost-effectiveness results for CDS interventions are highly heterogeneous, likely due to differences in implementation context and evaluation methodology. Improved quality of reporting, particularly from modeled economic evaluations, would assist decision makers to better interpret and utilize results from these primary research studies. REGISTRATION: PROSPERO (CRD42020203716).

Barriers and enablers to implementing and using clinical decision support systems for chronic diseases: a qualitative systematic review and meta-aggregation.

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.

Important lack of difference in tacrolimus and mycophenolic acid pharmacokinetics between Aboriginal and Caucasian kidney transplant recipients.

AIM: To examine whether differences in tacrolimus and mycophenolic acid (MPA) pharmacokinetics contribute to the poorer kidney transplant outcomes experienced by Aboriginal Australians. METHODS: Concentration-time profiles for tacrolimus and MPA were prospectively collected from 43 kidney transplant recipients: 27 Aboriginal and 16 Caucasian. Apparent clearance (CL/F) and distribution volume (V/F) for each individual were derived from concentration-time profiles combined with population pharmacokinetic priors, with subsequent assessment for between-group difference in pharmacokinetics. In addition, population pharmacokinetic models were developed using the prospective dataset supplemented by previously developed structural models for tacrolimus and MPA. The change in NONMEM objective function was used to assess improvement in goodness of model fit. RESULTS: No differences were found between Aboriginal and Caucasian groups or empirical Bayes estimates, for CL/F or V/F of MPA or tacrolimus. However, a higher prevalence of CYP3A5 expressers (26% compared with 0%) and wider between-subject variability in tacrolimus CL/F (SD = 5.00 compared with 3.25 L/h/70 kg) were observed in the Aboriginal group, though these differences failed to reach statistical significance (p = .07 and p = .08). CONCLUSION: There were no differences in typical tacrolimus or MPA pharmacokinetics between Aboriginal and Caucasian kidney transplant recipients. This means that Bayesian dosing tools developed to optimise tacrolimus and MPA dosing in Caucasian recipients may be applied to Aboriginal recipients. In turn, this may improve drug exposure and thereby transplant outcomes in this group. Aboriginal recipients appeared to have greater between-subject variability in tacrolimus CL/F and a higher prevalence of CYP3A5 expressers, attributes that have been linked with inferior outcomes.

Dialysis attendance patterns and health care utilisation of Aboriginal patients attending dialysis services in urban, rural and remote locations.

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 < 0.001) when compared to those who relocated and dialysed in urban areas. CONCLUSION: There is a clear relationship between the provision and uptake of dialysis services in urban, rural and remote areas in the NT and subsequent broader health service utilisation. Our study suggests that the low dialysis attendance associated with relocation and care in urban models for Aboriginal people can potentially be ameliorated by access to rural and remote models and this warrants a rethinking of service delivery policy. If providers are to deliver effective and equitable services, the full range of intended and unintended consequences of a dialysis location should be incorporated into planning decisions.

Comparison of free plasma versus saliva mycophenolic acid exposure following mycophenolate mofetil administration in adult kidney transplant recipients.

Therapeutic monitoring (TDM) of mycophenolic acid (MPA) has the potential to improve drug inefficacy and toxicities in kidney transplantation. However, measurement of plasma MPA concentrations is laborious and invasive. This study examined the utility of saliva compared with plasma based TDM of MPA. Paired blood and saliva samples were collected from 47 adult kidney transplant recipients pre- and at 1-, 2-, and 4-hours post mycophenolate mofetil administration. No relationship was observed between saliva MPA concentrations and either total or free plasma MPA concentrations (p > 0.05). This suggests that saliva is a poor direct marker of plasma MPA concentrations and therefore should not be used for MPA TDM.

Do remote dialysis services really cost more? An economic analysis of hospital and dialysis modality costs associated with dialysis services in urban, rural and remote settings.

BACKGROUND: Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use. Existing dialysis cost studies have not compared total health care costs associated with treatment in different locations. OBJECTIVE: To estimate and compare, from a payer perspective, the observed health service costs (all cause hospital admissions, emergency department presentations and maintenance dialysis) associated with different dialysis models in urban, rural and remote locations. METHODS: Using cost weights attributed to diagnostic codes in the NT Department of Health's hospital admission data set (2008-2014), we calculated the mean (SD) total annual health service costs by dialysis model for 995 dialysis patients. Generalized linear modeling with bootstrapping tested the marginal cost differences between different explanatory variables to estimate 'best casemix'/'worst casemix' cost scenarios. RESULTS: The mean annual patient hospital expenditure was highest for urban models at $97 928 (SD $21 261) and $43 440 (SD $5 048) and lowest for remote at $19 584 (SD $4 394). When combined with the observed maintenance dialysis costs, expenditure was the highest for urban models at $148 510 (SD $19 774). The incremental cost increase of dialysing in an urban area, compared with a rural area, for a relocated person from a remote area, was $5 648 more and increased further for those from remote and very remote areas to $10 785 and $15 118 respectively. CONCLUSIONS: This study demonstrates that dialysis treatment in urban areas for relocated people has health and cost implications that maybe greater than the cost of remote service delivery. The study emphasises the importance of considering all health service costs and cost consequences of service delivery models. KEY POINTS FOR DECISION MAKERS: Relocation for dialysis treatment has serious health and economic consequences. Relocated people have low dialysis attendance and high hospital costs in urban areas. While remote dialysis service models are more expensive than urban models, the comparative cost differences are significantly reduced when all health service costs are included. The delivery of equitable and accessible dialysis service models requires a holistic approach that incorporates the needs of the patient; hence dialysis cost studies must consider the full range of cost impacts beyond the dialysis treatments alone.

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.

Economic and quality of care evaluation of dialysis service models in remote Australia: protocol for a mixed methods study.

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.

Effectiveness, cost effectiveness, acceptability and implementation barriers/enablers of chronic kidney disease management programs for Indigenous people in Australia, New Zealand and Canada: a systematic review of mixed evidence.

BACKGROUND: Indigenous peoples in Australia, New Zealand and Canada carry a greater burden of chronic kidney disease (CKD) than the general populations in each country, and this burden is predicted to increase. Given the human and economic cost of dialysis, understanding how to better manage CKD at earlier stages of disease progression is an important priority for practitioners and policy-makers. A systematic review of mixed evidence was undertaken to examine the evidence relating to the effectivness, cost-effectiveness and acceptability of chronic kidney disease management programs designed for Indigenous people, as well as barriers and enablers of implementation of such programs. METHODS: Published and unpublished studies reporting quantitative and qualitative data on health sector-led management programs and models of care explicitly designed to manage, slow progression or otherwise improve the lives of Indigenous people with CKD published between 2000 and 2014 were considered for inclusion. Data on clinical effectiveness, ability to self-manage, quality of life, acceptability, cost and cost-benefit, barriers and enablers of implementation were of interest. Quantitative data was summarized in narrative and tabular form and qualitative data was synthesized using the Joanna Briggs Institute meta-aggregation approach. RESULTS: Ten studies were included. Six studies provided evidence of clinical effectiveness of CKD programs designed for Indigenous people, two provided evidence of cost and cost-effectiveness of a CKD program, and two provided qualitative evidence of barriers and enablers of implementation of effective and/or acceptable CKD management programs. Common features of effective and acceptable programs were integration within existing services, nurse-led care, intensive follow-up, provision of culturally-appropriate education, governance structures supporting community ownership, robust clinical systems supporting communication and a central role for Indigenous Health Workers. CONCLUSIONS: Given the human cost of dialysis and the growing population of people living with CKD, there is an urgent need to draw lessons from the available evidence from this and other sources, including studies in the broader population, to better serve this population with programs that address the barriers to receiving high-quality care and improve quality of life.

Remote indigenous peritoneal dialysis patients have higher risk of peritonitis, technique failure, all-cause and peritonitis-related mortality.

BACKGROUND: The number of indigenous patients with end-stage kidney disease (ESKD) is increasing in Australia, reflecting a similar trend in other countries. Because many indigenous patients live in remote areas, peritoneal dialysis (PD) is often preferred. Compared to non-indigenous PD patients, indigenous patients have increased complication rates but the effect of residential locations on outcomes remains unclear. The aim of this study is to examine the association between race and PD outcomes stratified by location. METHODS: Using the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry, all adult ESKD patients commencing PD in Australia between 1995 and 2008 were included. Patients were stratified as non-indigenous or indigenous race and were grouped according to their residential location, the latter stratified into metropolitan, regional and remote areas. Outcomes evaluated included peritonitis, technique failure, peritonitis-related and all-cause mortality. RESULTS: Regional and/or remote PD patients generally have a greater risk peritonitis-related complications and/or mortality compared to metropolitan patients. However, remote indigenous PD patients had the greatest risk of all PD-related complications, including all-cause and peritonitis-related mortality. CONCLUSIONS: This registry analysis demonstrates that non-metropolitan PD patients, especially remote indigenous patients, have higher complication rates, suggesting that environmental factors are important in determining PD outcomes.