Stephen P. McDonald

Aim: In 2012, the Australian state of Victoria introduced a 6‐monthly reportable renal quality indicator (QI) for the proportion of patient's waitlisted or pre‐emptively transplanted by set time points after beginning kidney replacement therapy (KRT). This prospective cohort study aimed to determine if the QI influenced timeliness of transplant waitlisting for Victorians, compared to the rest of Australia as a control group. Methods: Patients aged 18–70 commencing KRT between 2007 and 2020 were extracted from the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA) and divided into three time eras. The primary outcome was the percentage of patients waitlisted or transplanted at 6, 12 and 24 months from starting KRT. Given the systematic disadvantage reported, specific analysis was performed to examine the QI's effect on Aboriginal and Torres Strait Islander people living in Victoria. Results: Of 25 836 (14.7% Indigenous) patients starting dialysis, one third (8587, 5.7% Indigenous) were listed for transplant. Following implementation of the QI, the proportion of Victorian patients waitlisted within 6, 12 and 24‐months of starting KRT increased (adjusted OR [aOR] 1.85, 1.67 and 1.55 respectively; all p < 0.001). There was no significant change in Australian (non‐Victorian) rates at 6 and 12 months but a small increase was observed at 24 months. Conclusion: Following introduction of the Victorian renal QI, the proportion of Victorian patients waitlisted at key timepoints improved more than patients in Australian states without QIs.

Background: Patient‐reported outcome measures can highlight the impact of kidney failure and kidney replacement therapy on a person's health‐related quality of life and symptom burden. But their implementation is limited and heterogeneous within Australian and New Zealand kidney care. Objective: Identify one generic health‐related quality of life and one kidney‐specific patient‐reported outcome measure suitable for inclusion within the Australia and New Zealand Dialysis and Transplant Registry, including the mode and location of administration, timing and frequency of completion, and data presentation format. Design: A three‐phase modified Delphi study comprising two online surveys and a virtual consensus workshop. Participants: Patients, carers, clinicians, researchers, and kidney registry staff from Australia, New Zealand and the United Kingdom. Measurements: Participants voted on: their preferred patient‐reported outcome measures, the mode and location of administration, timing and frequency of completion, and how they would like the data presented at the individual and aggregated levels. Results: Fifty‐three people consented to the study, 41 completed Survey #1, 43 completed Survey #2, and 30 attended the consensus workshop. The EuroQOL‐5 Dimensions‐5 Levels for generic health‐related quality of life and the Integrated Palliative care Outcome Scale‐Renal for kidney‐specific outcomes reached majority vote. Participants agreed on electronic completion at home or in the dialysis unit to allow for staff support if needed. Consensus was not reached on the frequency of administration; most voted for completion at the commencement of dialysis or transplant and 6‐monthly thereafter as a minimum. Conclusion: The EuroQOL‐5 Dimensions‐5 Levels and the Integrated Palliative care Outcome Scale‐Renal were recommended for collection by the Australia and New Zealand Dialysis and Transplant Registry. These will enable standardised, meaningful assessments of patients' health outcomes and support continuous quality improvement across kidney care services bi‐nationally.

Acute kidney injury is a common complication of cardiac surgery and may lead to kidney failure. In a large sample sourced from national registries, we esti

Key Points: Aboriginal and Torres Strait Islander people are less likely to commence dialysis with preformed dialysis access than non-Indigenous Australians. Cocreated, culturally safe models of dialysis preparation for Aboriginal and Torres Strait Islander people are essential to improve health outcomes. Background: It is a priority for Aboriginal and Torres Strait Islander Australians living with kidney failure to receive best practice care. Commencing dialysis with preformed access (arteriovenous fistula, arteriovenous graft, or peritoneal dialysis catheter) is considered best practice; however, rates remain low. Data for Aboriginal and Torres Strait Islander people are limited. The aim of this study was to establish the differences in rates of preformed dialysis access between Aboriginal and Torres Strait Islander people and non-Indigenous Australians. Methods: Using the Australia and New Zealand Dialysis and Transplantation Registry, we considered all Australian adult people commencing chronic dialysis (January 1, 2004–December 31, 2020), comparing rates of preformed dialysis access between Aboriginal and Torres Strait Islander and non-Indigenous people, and evaluated the association with geographical remoteness and late referral. Results: Of 43,273 people commencing dialysis, 56.7% had preformed dialysis access. Aboriginal and Torres Strait Islander people were less likely to commence dialysis with preformed access (adjusted odds ratio [aOR], 0.75; 95% confidence interval [CI], 0.68 to 0.83). For Aboriginal and Torres Strait Islander people living remotely, the disparity was greater (aOR, 0.45; 95% CI, 0.32 to 0.65). Of the 20% of the cohort referred late, rates of preformed dialysis access were lowest (24.5%), but the association with ethnicity was no longer apparent (aOR, 0.87; 95% CI, 0.69 to 1.08). Conclusions: Aboriginal and Torres Strait Islander people, especially those living remotely, are less likely to receive best-practice care when commencing dialysis. Cocreated, culturally safe models to improve dialysis preparation for Aboriginal and Torres Strait Islander people are essential to close the gap in health outcomes.

Introduction: Therapy alerts during automated peritoneal dialysis (APD) can cause significant disruptions to patients’ sleep and quality of life and may portend poorer outcomes. Understanding the relationship between alert frequency during this early period and longer-term PD outcomes is important. Methods: Following the probabilistic linkage of Vantive's Sharesource database to the Australian and New Zealand Dialysis and Transplant (ANZDATA) Registry, we examined the relationship between alert frequency in the first 30 days of APD and PD discontinuation. We included adult patients in Australia and New Zealand who commenced APD with the Vantive Homechoice Claria cycler over 2019–2023 and continued for at least 30 days. The average alerts per treatment in the first 30 days were divided into quartiles and time to PD discontinuation (inclusive of HD transfer and death), HD transfer only, and infective and non-infective HD transfer were modelled as outcomes. Results: The cohort was 1880 patients, 65% male, and median age at PD commencement of 58 years. Overall PD continuation at 1,2, and 3 years was 78%, 56% and 41%, with HD transfer rates at 14%, 23% and 27%. Higher rates of HD transfer in the first 12 months were seen in the groups with a higher average alert number. Within 12 months, there was a progressive risk of non-infective HD transfer with increasing 30-day alert quartile. Conclusion: Alert burden in the first 30 days is a risk factor for HD transfer in the first 12 months, and resolving underlying issues early may help to improve PD continuation.

Objectives: To investigate the epidemiology in Australia of catheter‐related infections in a national cohort of adults with kidney failure with incident haemodialysis central venous catheters (CVCs).Study design: Cohort study nested within a cluster‐randomised trial (REDUcing the burden of dialysis Catheter Complications, REDUCCTION); analysis of prospectively collected trial data, linked with Australian and New Zealand Dialysis and Transplant (ANZDATA) registry and state hospitalisations data.Setting: Thirty‐four health services in Australia (excluding Western Australia) that provide chronic haemodialysis and participated in the REDUCCTION trial.Participants: Adults (18 years or older) with chronic kidney failure who received incident haemodialysis CVCs during 20 December 2016 – 31 March 2020.Main outcome measures: Hospitalisation with any haemodialysis CVC infection; haemodialysis CVC‐related bloodstream infections reported during the trial and verified by an independent panel.Results: Our analysis included 3943 adults with chronic kidney failure; their mean age was 60.4 years (standard deviation, 15.5 years); 1556 were women (39.5%) and 485 were Aboriginal or Torres Strait Islander people (12.3%). Catheter‐related infections were coded for 644 hospitalisations (24.5 per 100 patient‐years; 95% confidence interval [CI], 22.6–26.4 per 100 patient‐years); the incidence was higher among people under 55 years of age (adjusted incidence rate ratio [IRR], 1.55; 95% CI, 1.21–1.98) and those aged 55–70 years (adjusted IRR, 1.34; 95% CI, 1.05–1.70) than among people over 70 years of age. Community‐onset haemodialysis catheter‐related bloodstream infections were responsible for 159 hospitalisations (8.2% of 1938 infection‐related hospitalisations); 57 of 650 infection‐related hospitalisations of people under 55 years of age (8.8%), 62 of 640 of people aged 55–70 years (9.7%), and 40 of 648 of people over 70 years of age (6.2%). The median length of hospital stay with community‐onset haemodialysis CVC‐related bloodstream infections was ten days (interquartile range, 5–15 days), metastatic spread of infection was detected in twelve cases (7.5%), and four people died in hospital (2.5%); 40 removed haemodialysis CVCs did not require replacement. Nineteen of 121 hospitalisations for which the information was available included intensive care unit admissions (15.7%; median stay, 2.7 days; IQR, 1.1–4.6 days). The risk of haemodialysis CVC‐related Staphylococcus aureus bloodstream infection declined with age (relative risk ratio, 0.65 per decade; 95% CI, 0.47–0.89).Conclusions: The health burden of haemodialysis CVC infections in Australia is substantial, particularly among adults under 70 years of age.

Background: Registries monitor treatment pathways and outcomes, driving healthcare improvements. However, registry outputs often target professionals, hindering consumer understanding. National strategies advocate for registries to engage in consumer co-design to develop accessible, consumer-friendly resources that empower the community to make informed decisions using registry outputs. This publication outlines the process undertaken to translate four registry outputs into consumer-friendly resources. Objective: To develop resources that support consumers to understand and use registry outputs to make informed healthcare decisions. Method: The Consumer-Friendly Information project employed a three-stage co-design approach over 12 months: establishment, consultation and resource development. A mix of lived experience and general consumers were recruited through diverse channels including consumer organisations and clinicians. Consumers were educated on registry outputs, identified key messages and contributed to resource creation through prototypes and iterative feedback. Audience-specific considerations and continuous communication between consumers, registries, and designers helped to balance scientific accuracy and accessibility. Results: Nine consumers participated in the project, collaborating in three subgroups to co-design six resources (two per registry). These included one infographic, one fact sheet, one animation, one video and two booklets. The resources were shaped by consumer needs and preferences. Conclusion: This study demonstrates the value of co-design in translating registry outputs, emphasising the need for careful planning, expectation management and communication between stakeholders to ensure consumer-friendly and evidence-based resources are developed. Implications for health information management practice: This practical “how-to guide” documenting the co-design process will support broader adoption across registries and health organisations.

Objectives: To describe clinician‐reported reasons for non‐waitlisting of patients with kidney failure for deceased donor kidney transplantation, and to examine disparities affecting Aboriginal and Torres Strait Islander people.Design: Retrospective cross‐sectional analysis of data from a national clinical quality registry.Participants and setting: Patients receiving dialysis in 26 Australian renal units as of 31 December 2020.Main outcome measures: Rates of active waitlisting for kidney transplantation and clinician‐reported reasons for non‐waitlisting.Results: Thirty‐six of 1832 Aboriginal and Torres Strait Islander people (2.0%) were actively waitlisted, compared with 512 of 6128 non‐Indigenous people (8.4%). For Aboriginal and Torres Strait Islander patients aged < 65 years, 457 of 1204 (38%) were not waitlisted due to a permanent contraindication, 276 (23%) due to a temporary contraindication, and 232 (19%) due to incomplete work‐up. Among those with a contraindication, cardiovascular disease was reported as the reason for about a quarter of people in both groups. Obesity was cited for 163 Aboriginal and Torres Strait Islander patients aged < 65 years (22%) and 30 Aboriginal and Torres Strait Islander patients aged ≥ 65 years (10%); in the non‐Indigenous group, obesity was cited for 207 (26%) and 163 (9%) patients aged < 65 years and ≥ 65 years, respectively. Cancer was reported for 28 Aboriginal and Torres Strait Islander patients aged < 65 years (4%) and 86 non‐Indigenous patients aged < 65 years (11%). Other reasons for non‐waitlisting, reported as free text, included patient safety, smoking, age and mental health.Conclusions: Aboriginal and Torres Strait Islander people experience inequities in waitlisting for kidney transplantation across multiple stages of a complex process. Addressing these barriers requires system‐level reform and accountability to improve equity in transplantation access.

Background: Clinical registries are long-term observational data collections relating to specific medical conditions, procedures, devices or health services. Objective: To assess current characteristics and outputs of clinical registries in Australia. Method: A cross-sectional survey design of Australian clinical registries listed on the Australian Commission on Safety and Quality in Health Care (ACSQHC) register as of 21 September 2023. Results: Of 107 clinical registries on the ACSQHC register that were contacted, 64 (60%) participated in the survey. Of these, 37 (58%) had been active for ⩾10 years, 38 (59%) were medical clinical registries and 35 (57%) received government funding. Clinical registry activities included research (92%), quality improvement (81%) and epidemiological monitoring (68%). Data were commonly patient-identifiable (64%) and collected by clinicians/staff (81%). A majority (55%) had real-time data available to contributing hospitals. Clinical registry outputs included providing data to researchers (97%), publications (83%), annual reports (69%) and site benchmarked reports (64%). Over half informed quality improvement activities (60%), monitored adherence to guidelines (59%) or informed policy or service planning (52%). Nearly half-supported clinical trials (49%), while one-fifth had integrated with government data frameworks. Conclusion: Australian clinical registries monitor health system performance across a breadth of clinical areas. A majority undertake regular public and hospital reporting and inform other quality improvement activities. Implications for health information management practice: Clinical registries interact with hospitals regarding their data collection and reporting activities. Health information management specialists have an important role in maximising registry data quality and therefore value to a wide variety of stakeholders.