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Background: Needle-related distress is a common yet poorly recognised and managed problem among haemodialysis (HD) patients. The aim of this pilot study is to test the feasibility and acceptability of the INJECT Intervention—an innovative psychology-based intervention to empower patients to self-manage needle distress with the support of dialysis nurses. Methods: This investigator-initiated, single-arm, non-randomised feasibility study will take place in a large dialysis service in Adelaide, Australia. Participants will include patients aged ≥ 18 years, commencing or already receiving maintenance HD, recruited through dialysis physicians and nursing staff as individuals believed to be at risk of needle distress. They will be screened for inclusion using the Dialysis Fear of Injection Questionnaire (DFIQ) and enrolled into the study if the score is ≥ 2. The multi-pronged intervention encompasses (i) psychologist review, (ii) patient self-management program and (iii) nursing education program. The primary aim is to evaluate feasibility and acceptability of the intervention from patient and dialysis nurse perspectives, including recruitment, retention, engagement with the intervention and completion. Secondary exploratory outcomes will assess suitability of various tools for measuring needle distress, evaluate acceptability of the nursing education program and measure cannulation-related trauma and vascular access outcomes. Conclusion: The results will inform the protocol for larger trials addressing needle distress in HD patients. Trial registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000229875, approved 4 April 2021, https://www.anzctr.org.au/. [ABSTRACT FROM AUTHOR]

Objective: To locate incident hotspots of dialysis demand in Australian capital cities and measure association with prevalent dialysis demand and socioeconomic disadvantage., Methods: A retrospective cohort study used Australia and New Zealand Dialysis and Transplant Registry data on people commencing dialysis for kidney failure (KF) resident in an Australian capital city, 1 January 2001 - 31 December 2021. Age-sex-standardised dialysis incidence was estimated by Statistical Area Level 3 (SA3) and dialysis prevalence by SA2., Results: A total of 32,391 people commencing dialysis were referenced to SA3s within city metropolitan areas based on residential postcode. Incident hotspots were located in Western Sydney. The highest average annual change of standardised incidence was 8.3 per million people (false discovery rate-corrected 95% CI 1.0,15.7) in Mount Druitt, reflecting a 263% increase in absolute demand from 2001-3 to 2019-21. Incident dialysis for diabetic kidney disease contributed substantially to total growth. Incident hotspots were co-located with areas where prevalent dialysis demand was associated with socioeconomic deprivation., Conclusions: Novel spatial analyses of geo-referenced registry data located hotspots of kidney failure and associated socio-demographic and comorbid states., Implications for Public Health: These analyses advance current abilities to plan dialysis capacity at a local level. Hotspots can be targeted for prevention and slowing the progression of kidney disease., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)

Objectives: To quantify the survival benefit of kidney transplantation for Aboriginal and Torres Strait Islander people waitlisted for deceased donor kidney transplantation in Australia., Study Design: Retrospective cohort study; analysis of linked data from the Australia and New Zealand Dialysis and Transplant (ANZDATA) registry, the Australia and New Zealand Organ Donation (ANZOD) registry, and OrganMatch (Australian Red Cross)., Setting, Participants: All adult Aboriginal and Torres Strait Islander people (18 years or older) who commenced dialysis in Australia during 1 July 2006 - 31 December 2020 and were included in the kidney-only deceased donor transplant waiting list., Main Outcome Measures: Survival benefit of deceased donor kidney transplantation relative to remaining on dialysis., Results: Of the 4082 Aboriginal and Torres Strait Islander people who commenced dialysis, 450 were waitlisted for kidney transplants (11%), of whom 323 received deceased donor transplants. Transplantation was associated with a significant survival benefit compared with remaining on dialysis after the first 12 months (adjusted hazard ratio [HR], 0.38; 95% confidence interval [CI], 0.20-0.73). This benefit was similar to that for waitlisted non-Indigenous people who received deceased donor kidney transplants (adjusted HR, 0.47; 95% CI, 0.40-0.57; Indigenous status interaction: P = 0.22)., Conclusions: From twelve months post-transplantation, deceased donor transplantation provides a survival benefit for Aboriginal and Torres Strait Islander people. Our findings provide evidence that supports efforts to promote the waitlisting of Aboriginal and Torres Strait Islander people who are otherwise eligible for transplantation., (© 2024 The Author(s). Medical Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of AMPCo Pty Ltd.)

Background: Transplanted women have high rates of preeclampsia. However, determinants of preeclampsia and association with graft survival and function remain uncertain. We aimed to determine rates of preeclampsia and its association with kidney transplant survival and function., Methods: This was a retrospective cohort study analyzing postkidney transplantation pregnancies (≥20 weeks gestation) from the Australia and New Zealand Dialysis and Transplant Registry (2000-2021). Graft survival was assessed in three models accounting for repeated pregnancies and episodes of preeclampsia., Results: Preeclampsia status was captured in 357 of 390 pregnancies and occurred in 133 pregnancies (37%). The percentage of pregnancies reported to have preeclampsia rose from 27% in 2000-2004 to 48% from 2018 to 2021. Reported prior exposure to calcineurin inhibitors was high overall and higher in women who had preeclampsia (97% versus 88%, P = 0.005). Seventy-two (27%) graft failures were identified after a pregnancy, with a median follow-up of 8.08 years. Although women with preeclampsia had higher median preconception serum creatinine concentration (1.24 [interquartile range, 1.00-1.50] versus 1.13 [0.99-1.36] mg/dl; P = 0.02), in all survival models, preeclampsia was not associated with higher death-censored graft failure. In multivariable analysis of maternal factors (age, body mass index, primary kidney disease and transplant-pregnancy interval, preconception serum creatinine concentration, era of birth event, and tacrolimus or cyclosporin exposure), only era and preconception serum creatinine concentration ≥1.24 mg/dl (odds ratio, 2.48; 95% confidence interval [CI], 1.19 to 5.18) were associated with higher preeclampsia risk. Both preconception eGFR <45 ml/min per 1.73 m 2 (adjusted hazard ratio [HR], 5.55; 95% CI, 3.27 to 9.44, P < 0.001) and preconception serum creatinine concentration ≥1.24 mg/dl (adjusted HR, 3.06; 95% CI, 1.77 to 5.27, P < 0.001) were associated with a higher risk of graft failure even after adjusting for maternal characteristics., Conclusions: In this large and contemporaneous registry cohort, preeclampsia was not associated with worse graft survival or function. Preconception kidney function was the main determinant of graft survival., (Copyright © 2023 by the American Society of Nephrology.)

Objectives To project the prevalence of people receiving dialysis in Australia for 2021-30 to inform service planning and health policy. Methods Estimates were based on data from 2011 to 2020 from the Australia & New Zealand Dialysis & Transplant (ANZDATA) Registry and the Australian Bureau of Statistics. We projected dialysis and functioning kidney transplant recipient populations for the years 2021-30. Discrete-time, non-homogenous Markov models were built on probabilities for transition between three mutually exclusive states (Dialysis, Functioning Transplant, Death), for five age groups. Two scenarios were employed - stable transplant rate vs a continued increase - to assess the impact of these scenarios on the projected prevalences. Results Models projected a 22.5-30.4% growth in the dialysis population from 14 554 in 2020 to 17 829 ('transplant growth') - 18 973 ('transplant stable') by 2030. An additional 4983-6484 kidney transplant recipients were also projected by 2030. Dialysis incidence per population increased and dialysis prevalence growth exceeded population ageing in 40-59 and 60-69 year age groups. The greatest dialysis prevalence growth was seen among those aged ≥70 years. Conclusion Modelling of the future prevalence of dialysis use highlights the increasing demand on services expected overall and especially by people aged ≥70 years. Appropriate funding and healthcare planning must meet this demand.

Background: Pregnancy in women receiving kidney replacement therapy (KRT) is uncommon, and trends and factors influencing fertility rates remain poorly defined., Methods: The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) was linked to mandatory perinatal data sets (all births from 1991 to 2013, ≥20 weeks' gestation) in four Australian jurisdictions. Overall, age- and era-specific fertility rates were calculated based on general and KRT population denominators., Results: From 2 948 084 births, 248 babies were born to 168 mothers receiving KRT (37 babies born to 31 dialysed mothers; 211 babies born to 137 transplanted mothers). Substantial agreement between ANZDATA and perinatal data sets was observed for birth events and outcomes. Transplanted women had higher fertility rates than dialysed women in all analyses, with 21.4 live births/1000 women/year [95% confidence interval (CI) 18.6-24.6] in transplanted women, 5.8 (95% CI 4.1-8.1) in dialysed women and 61.9 (95% CI 61.8-62.0) in the non-KRT cohort. Fertility rates for dialysed women rose in recent years. After adjusting for maternal age and treatment modality, Caucasian women had higher fertility rates, while women with pre-existing diabetes, or transplanted women with exposure to KRT for ≤3.0 years had lower rates. As expected, transplanted women with a pre-conception estimated glomerular filtration rate (eGFR) of <45 mL/min/1.73 m2 or transplant-to-pregnancy interval of <1.0 year had lower fertility rates. Geographical location, socioeconomic status and primary disease (glomerulonephritis versus other) did not affect fertility rates., Conclusions: Reporting of births to ANZDATA is sufficiently accurate to justify ongoing data collection. Rising fertility rates in dialysed women may indicate permissive attitudes towards pregnancy. Treatment modality, ethnicity, diabetes, pre-conception eGFR, transplant-to-pregnancy interval and duration of KRT exposure were associated with fertility rates. These factors should be considered when counselling women with kidney disease about parenthood., (© The Author(s) 2021. Published by Oxford University Press on behalf of ERA-EDTA.)

Data about pregnancy outcomes for simultaneous pancreas-kidney transplant recipients (SPKR) are limited. We compared pregnancy outcomes in SPKR to Kidney Transplant Recipients (KTR) from 2001-17 using the Australia and New Zealand Dialysis and Transplant (ANZDATA) Registry and the Australian and New Zealand Pancreas Islet Transplant Registry (ANZPITR). A total of 19 pregnancies to 15 SPKR mothers, and 348 pregnancies to 235 KTR mothers were reported. Maternal ages were similar (SPKR 33.9 ± 3.9 years; KTR 32.1 ± 4.8 years, p = .10); however, SPKR had a shorter transplant to first-pregnancy interval compared to KTR (SPKR 3.3 years, IQR (1.7, 4.1); KTR 5 years, IQR (2.6, 8.7), p = .02). Median difference in creatinine pre- and post-pregnancy was similar between the groups (KTR -3 µmol/L, IQR (-15, 6), SPKR -3 µmol/L, IQR (-11, 3), p = .86). Maternal, fetal and kidney transplant outcomes were similar despite higher rates of pre-existing peripheral vascular and coronary artery diseases in SPKR. Live birth rates (>20 weeks) were comparable (SPKR 93.8% vs. KTR 96.8%, p = .06). KTR with either type 1 or type 2 diabetes mellitus (24 births) had similar outcomes compared to SPKR. In this national cohort, pregnancy outcomes were similar between SPKR and KTR mothers; however, findings should be interpreted with caution due to small sample sizes., (© 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Introduction: People receiving haemodialysis experience a high symptom burden and impaired quality of life. The use of patient-reported outcome measures (PROMs) is increasing in nephrology care, however their acceptability, utility and impacts are not well understood., Methods and Analysis: We describe a protocol for a qualitative study to evaluate the feasibility and acceptability of electronic-PROMs (e-PROMs) data capture and feedback in haemodialysis following the pilot S ymptom monitoring WI th F eedback T rial (SWIFT). SWIFT involves linkage of e-PROMs data, including symptoms and health-related quality of life, to the Australia and New Zealand Dialysis and Transplant Registry with feedback to patients' treating nephrologists and nurse unit managers. Focus groups and semistructured interviews will be conducted with nephrologists (n=15), dialysis nurses (n=24) and patients receiving haemodialysis (n=24) from six dialysis units in Australia. Question topics will include the technical and clinical feasibility and acceptability of e-PROMs reporting and feedback (including the barriers and enablers to uptake) and perceived impact on patient care and outcomes. Transcripts will be analysed thematically and guided by Normalisation Process Theory., Ethics and Dissemination: Ethics approval was obtained from the relevant hospital Human Research Ethics Committees (HREC/18/CALHN/481; HREC/MML/54599). The findings from the SWIFT pilot and qualitative evaluation will inform the implementation of the SWIFT main trial, and more broadly, the use of e-PROMs in clinical settings and registries., Trial Registration Number: ANZCTRN12618001976279., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Achieving parenthood is challenging in individuals receiving renal replacement therapy (RRT; dialysis or kidney transplantation) for end-stage kidney disease. Decision-making regarding parenthood in RRT recipients should be underpinned by robust data, yet there is limited data on parental factors that drive adverse health outcomes. Therefore, we aim to investigate the perinatal risks and outcomes in parents receiving RRT., Methods and Analysis: This is a multijurisdictional probabilistic data linkage study of perinatal, hospital, birth, death and renal registers from 1991 to 2013 from New South Wales, Western Australia, South Australia and the Australian Capital Territory. This study includes all babies born ≥20 weeks' gestation or 400 g birth weight captured through mandated data collection in the perinatal data sets. Through linkage with the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, babies exposed to RRT (and their parents) will be compared with babies who have not been exposed to RRT (and their parents) to determine obstetric and fetal outcomes, birth rates and fertility rates. One of the novel aspects of this study is the method that will be used to link fathers receiving RRT to the mothers and their babies within the perinatal data sets, using the birth register, enabling the identification of family units. The linked data set will be used to validate the parenthood events directly reported to ANZDATA., Ethics and Dissemination: Ethics approval was obtained from Human Research Ethics Committees (HREC) and Aboriginal HREC in each jurisdiction. Findings of this study will be disseminated at scientific conferences and in peer-reviewed journals in tabular and aggregated forms. De-identified data will be presented and individual patients will not be identified. We will aim to present findings to relevant stakeholders (eg, patients, clinicians and policymakers) to maximise translational impact of research findings., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and Objectives: Pregnancy in ESRD is rare and poses substantial risk for mother and baby. This study describes a large series of pregnancies in women undergoing long-term dialysis treatment and reviews maternal and fetal outcomes. Specifically, women who had conceived before and after starting long-term dialysis are compared., Design, Setting, Participants, & Measurement: All pregnancies reported to the Australian and New Zealand Dialysis and Transplantation Registry from 2001 to 2011 (n=77), following the introduction of specific parenthood data collection, were analyzed., Results: Between 2001 and 2011, there were 77 pregnancies among 73 women. Of these, 53 pregnancies were in women who conceived after long-term dialysis was established and 24 pregnancies occurred before dialysis began. The overall live birth rate (after exclusion of elective terminations) was 73%. In pregnancies reaching 20 weeks gestation, the live birth rate was 82%. Women who conceived before dialysis commenced had significantly higher live birth rates (91% versus 63%; P=0.03), but infants had similar birthweight and gestational age. This difference in live birth rate was primarily due to higher rates of early pregnancy loss before 20 weeks in women who conceived after dialysis was established. In pregnancies that reached 20 weeks or more, the live birth rate was higher in women with conception before dialysis commenced (91% versus 76%; P=0.28). Overall, the median gestational age was 33.8 weeks (interquartile range, 30.6-37.6 weeks) and median birthweight was 1750 g (interquartile range, 1130-2417 g). More than 40% of pregnancies reached >34 weeks' gestation; prematurity at <28 weeks was 11.4% and 28-day neonatal survival rate was 98%., Conclusions: Women with kidney disease who start long-term dialysis after conception have superior live birth rates compared with those already established on dialysis at the time of conception, although these pregnancies remain high risk.

Pregnancy outcomes in a transplant population have not been well documented. Data from the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and the National Perinatal Epidemiology and Statistics Unit (NPESU) were analyzed. We described pregnancy outcomes within the transplant population and compared these to outcomes for the general population. Six hundred ninety-two pregnancies in 447 transplant recipients were reported between 1971 and 2010 (ANZDATA); a corresponding 5 269 645 pregnancies were reported nationally in Australia between 1991 and 2010 (NPESU). At pregnancy transplant mothers had a median age of 31 years (interquartile range [IQR]: 27, 34), a median creatinine of 106 µmol/L (IQR: 88, 1103 µmol/L) and a functioning transplant for a median of 5 years (IQR: 3, 9). The mean gestational age at birth was 35 ± 5 weeks in transplant recipients, significantly shorter than the national average of 39 weeks (p < 0.0001). Mean live birth weight for transplant recipients was 873 g lower than the national average (2485 ± 783 g vs. 3358 ± 2 g); a significant difference remained after controlling for gestational age. There was lower perinatal survival rate in babies born to transplant recipients, 94% compared with 99% nationally (p < 0.001). Although transplant pregnancies are generally successful, outcomes differ from the general population, indicating these remain high-risk pregnancies despite good allograft function., (© Copyright 2013 The American Society of Transplantation and the American Society of Transplant Surgeons.)