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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 FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]