@article{Wyld2023,

title = {Life Years Lost in Children with Kidney Failure: A Binational Cohort Study with Multistate Probabilities of Death and Life Expectancy},

author = {Melanie L. Wyld and Nicole L. De La Mata and James Hedley and Siah Kim and Patrick J. Kelly and Angela C. Webster},

doi = {10.1681/asn.0000000000000118},

issn = {1533-3450},

year  = {2023},

date = {2023-00-00},

urldate = {2023-00-00},

journal = {JASN},

volume = {34},

number = {6},

pages = {1057--1068},

publisher = {Ovid Technologies (Wolters Kluwer Health)},

abstract = {<jats:sec><jats:title>Significance Statement</jats:title><jats:p>In children with kidney failure, little is known about their treatment trajectories or the effects of kidney failure on lifetime survival and years of life lost, which are arguably more relevant measures for children. In this population-based cohort study of 2013 children who developed kidney failure in Australia and New Zealand, most children were either transplanted after initiating dialysis (74%) or had a preemptive kidney transplant (14%). Life expectancy increased with older age at kidney failure, but more life years were spent on dialysis than with a functioning transplant. The expected (compared with the general population) number of life years lost ranged from 16 to 32 years, with female patients and those who developed kidney failure at a younger age experiencing the greatest loss of life years.</jats:p></jats:sec><jats:sec><jats:title>Background</jats:title><jats:p>Of the consequences of kidney failure in childhood, those rated as most important by children and their caregivers are its effects on long-term survival. From a life course perspective, little is known about the experience of kidney failure treatment or long-term survival.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>To determine expected years of life lost (YLL) and treatment trajectory for kidney failure in childhood, we conducted a population-based cohort study of all children aged 18 years or younger with treated kidney failure in Australia (1980–2019) and New Zealand (1988–2019).We used patient data from the CELESTIAL study, which linked the Australian and New Zealand Dialysis and Transplant registry with national death registers. We estimated standardized mortality ratios and used multistate modeling to understand treatment transitions and life expectancy.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>A total of 394 (20%) of 2013 individuals died over 30,082 person-years of follow-up (median follow-up, 13.1 years). Most children (74%) were transplanted after initiating dialysis; 14% (18% of male patients and 10% of female patients) underwent preemptive kidney transplantation. Excess deaths (compared with the general population) decreased dramatically from 1980 to 1999 (from 41 to 22 times expected) and declined more modestly (to 17 times expected) by 2019. Life expectancy increased with older age at kidney failure, but more life years were spent on dialysis than with a functioning transplant. The number of YLL ranged from 16 to 32 years, with the greatest loss among female patients and those who developed kidney failure at a younger age.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>Children with kidney failure lose a substantial number of their potential life years. Female patients and those who develop kidney failure at younger ages experience the greatest burden.</jats:p></jats:sec>},

keywords = {General Medicine, Nephrology, Other CODE work},

pubstate = {published},

tppubtype = {article}

}

@article{Thomson2022,

title = {Potential organ donors with primary brain tumours: missed opportunities for donation and transplantation identified in Australian cohort study 2010–2015},

author = {Imogen K. Thomson and James Hedley and Brenda M. Rosales and Kate Wyburn and Michael J. O'Leary and Angela C. Webster},

doi = {10.1111/ans.18037},

issn = {1445-2197},

year  = {2022},

date = {2022-11-00},

urldate = {2022-11-00},

journal = {ANZ Journal of Surgery},

volume = {92},

number = {11},

pages = {2996--3003},

publisher = {Wiley},

abstract = {<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>Potential organ donors with primary brain tumours (PBT) frequently donate, however some may be declined due to uncertainty about tumour classification or transmission risk to transplant recipients. We sought to describe transmission risk and donation outcome of potential donors with PBT, including identifying missed opportunities for transplantation, and any PBT transmission events.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>We undertook a population‐based cohort study in NSW of all potential donors 2010–2015. PBT potential donors were characterized according to tumour grade and transmission risk, and whether they donated organs. Data linkage was used to determine agreement of risk assessment of potential donors to that in the Biovigilance Register, and to identify any PBT transmissions.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Of 2957 potential donors, 76 (3%) had PBTs. There was agreement of risk assessment in 44 (58%) cases. PBT potential donors had fewer comorbidities (1.6 vs. 2.1, <jats:italic>P</jats:italic> = 0.006) than non‐PBT potential donors. Forty‐eight (63%) potential donors were declined for non‐PBT reasons, 18 (24%) were declined because of perceived PBT transmission risk and 10 (13%) donated. All PBT donors had WHO‐I or ‐II tumours, and none had a ventriculo‐pertioneal shunt. No transmission events occurred.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>Donors with WHO‐I/II PBT appear to have minimal risk of tumour transmission in solid organ transplantation; it is reassuring that no PBT transmission occurred. There is evidence of risk aversion to referrals with WHO‐III/IV tumours. There exists opportunity to improve potential donor risk assessment at the time of referral using integrated data sets, and to increase organ donation and transplantation rates through greater utilization of PBT referrals.</jats:p></jats:sec>},

keywords = {General Medicine, MODUS, Surgery},

pubstate = {published},

tppubtype = {article}

}

@article{Hedley2022,

title = {Patient and kidney transplant survival in type 1 diabetics after kidney transplant alone compared to simultaneous pancreas‐kidney transplant},

author = {James A. Hedley and Patrick J. Kelly and Angela C. Webster},

doi = {10.1111/ans.17663},

issn = {1445-2197},

year  = {2022},

date = {2022-07-00},

urldate = {2022-07-00},

journal = {ANZ Journal of Surgery},

volume = {92},

number = {7-8},

pages = {1856--1862},

publisher = {Wiley},

abstract = {<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>Donor and other differences mean understanding drivers of transplant survival for type 1 diabetics is challenging. We aimed to compare outcomes of simultaneous pancreas‐kidney transplant over kidney transplant alone for people with end‐stage kidney disease (ESKD) and type 1 diabetes.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>We performed a population‐based cohort study comparing outcomes from kidney alone and kidney‐pancreas transplants using registry data. Our study population was people in Australia and New Zealand with type 1 diabetes and ESKD who received a kidney transplant in 1984–2016. Primary outcomes were time to kidney transplant failure and all‐cause death. Secondary outcomes were time to cardiovascular and non‐cardiovascular death. We compared adjusted survival using Cox regression (hazard ratio HR and 95% confidence intervals CI).</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Of 1295 type 1 diabetics receiving a transplant, 430 (33%) received deceased donor kidney, 172 (13%) received living donor kidney, and 693 (54%) received pancreas‐kidney transplant. Compared to deceased donor kidney, pancreas‐kidney recipients had 40% lower rate of kidney transplant failure (adjusted HR 0.60; 95% CI 0.45–0.81; <jats:italic>p</jats:italic> = 0.001) and 34% lower mortality (adjusted HR 0.66; 95% CI 0.53–0.83; <jats:italic>p</jats:italic> < 0.001), driven by 49% reduction in cardiovascular mortality (adjusted HR 0.51; 95% CI 0.36–0.72; <jats:italic>p</jats:italic> < 0.001). Pancreas‐kidney recipients had similar reductions in transplant failure and mortality compared to living kidney recipients, after adjusting for transplant timing.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>For people with type 1 diabetes, pancreas‐kidney transplant provides improved transplant and overall survival compared to deceased donor kidney alone. Living donor kidneys may perform just as well as pancreas‐kidney transplant if waiting times are short.</jats:p></jats:sec>},

keywords = {General Medicine, Other CODE work, Surgery},

pubstate = {published},

tppubtype = {article}

}

@article{Khou2022,

title = {Epidemiology of cardiovascular death in kidney failure: An Australian and New Zealand cohort study using data linkage},

author = {Victor Khou and Nicole L. De La Mata and Patrick J. Kelly and Philip Masson and Emma O'Lone and Rachael L. Morton and Angela C. Webster},

doi = {10.1111/nep.14020},

issn = {1440-1797},

year  = {2022},

date = {2022-05-00},

urldate = {2022-05-00},

journal = {Nephrology},

volume = {27},

number = {5},

pages = {430--440},

publisher = {Wiley},

abstract = {<jats:title>Abstract</jats:title><jats:sec><jats:title>Aim</jats:title><jats:p>Cardiovascular mortality risk evolves over the lifespan of kidney failure (KF), as patients develop comorbid disease and transition between treatment modalities. Absolute cardiovascular death rates would help inform clinical practice and health‐care provision, but are not well understood across a continuum of dialysis and transplant states. We aimed to characterize cardiovascular death across the natural history of KF using a lifespan approach.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>We performed a population‐based cohort study of incident patients commencing kidney replacement therapy in Australia and New Zealand. Cardiovascular deaths were identified using data linkage to national death registers. We estimated the probability of death and kidney transplant using multi‐state models, and calculated rates of graft failure and cardiovascular death across demographic factors and comorbidities.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Among 60 823 incident patients followed over 381 874 person‐years, 25% (8492) of deaths were from cardiovascular disease. At 15 years from treatment initiation, patients had a 15.2% probability of cardiovascular death without being transplanted, but only 2.3% probability of cardiovascular death post‐transplant. Females had a 3% lower probability of cardiovascular death at 15 years (15.3% vs. 18.6%) but 4% higher probability of non‐cardiovascular death (54.5% vs. 50.8%). Within the first year of dialysis, cardiovascular mortality peaked in the second month and showed little improvement across treatment era.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>Despite improvements over time, cardiovascular death remains common in KF, particularly among the dialysis population and in the first few months of treatment. Multi‐state models can provide absolute measures of cardiovascular mortality across both dialysis and transplant states.</jats:p></jats:sec>},

keywords = {CELESTIAL, General Medicine, Nephrology},

pubstate = {published},

tppubtype = {article}

}

@article{Rosales2020,

title = {Safety and Biovigilance in Organ Donation (SAFEBOD): Protocol for a Population-Based Cohort Study},

author = {Brenda Rosales and James Hedley and Nicole De La Mata and Claire M Vajdic and Patrick Kelly and Kate Wyburn and Angela C Webster},

doi = {10.2196/18282},

issn = {1929-0748},

year  = {2020},

date = {2020-00-00},

urldate = {2020-00-00},

journal = {JMIR Res Protoc},

volume = {9},

number = {10},

publisher = {JMIR Publications Inc.},

abstract = {<jats:sec>

            <jats:title>Background</jats:title>

            <jats:p>Tension lies between the need to increase access to organ transplantation and the equally urgent need to prevent inadvertent transmission of infectious diseases or cancer from organ donors. Biovigilance, or the evaluation of potential donors, is often time-pressured and may be based on incomplete information.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Objective</jats:title>

            <jats:p>The Safety and Biovigilance in Organ Donation (SAFEBOD) study aims to improve estimates of infection and cancer transmission risk and explore how real-time data access could support decision-making.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Methods</jats:title>

            <jats:p>We will link existing donor referral, actual donor, recipient, and health-outcome data sets from 2000-2015 in New South Wales. Organ donor data sets will include the Organ Donor Characterizing Risk-Profile of Donors Study, the National Organ Matching System, the Australian and New Zealand Organ Donor Register, and the Australian and New Zealand Living Donor Kidney Register. Recipient data sets will include the Australian and New Zealand Dialysis and Transplant Register, the Australian and New Zealand Cardiothoracic Register, the Australian and New Zealand Islet and Pancreas Register, and the Australian and New Zealand Liver Transplant Register. New South Wales health outcome data sets will include HIV and AIDS Notifications and Surveillance Data, the Notifiable Conditions Information Management System, Admitted Patient Data Collection, Emergency Department Data Collection, the Central Cancer Registry, and the Cause of Death Data Collection. We will link organ donors to transplant recipients and health outcomes data sets using probabilistic data-matching based on personal identifiers. Transmission and nontransmission events will be determined by comparing previous cases in donors and posttransplant cases in recipients. We will compare the perceived-risk at referral with the verified risk from linked health outcome data sets and the odds of cancer or contracting an infectious disease in organ recipients from donors based on their transmission-risk profile and estimate recipient survival by donor transmission risk group.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Results</jats:title>

            <jats:p>Data were requested from each of the listed registries in September 2018, and data collection is ongoing. Linked data from all listed data sets are expected to be complete in September 2020.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>Conclusions</jats:title>

            <jats:p>The SAFEBOD study will overcome current limitations in organ donation by accessing comprehensive information on referred organ donors and recipients in existing data sets. The study will provide robust estimates of disease transmission and nontransmission events based on recent data. It will also describe the agreement between perceived risk estimated at the time of referral and verified risk when all health outcome data are accessible. The improved understanding of transmission and nontransmission events will inform clinical decisions and highlight where current policies can be revised to broaden the acceptance of deceased donors.</jats:p>

          </jats:sec>

          <jats:sec>

            <jats:title>International Registered Report Identifier (IRRID)</jats:title>

            <jats:p>DERR1-10.2196/18282</jats:p>

          </jats:sec>},

keywords = {General Medicine, SAFEBOD},

pubstate = {published},

tppubtype = {article}

}

@article{Waller2019,

title = {Residual risk of infection with blood‐borne viruses in potential organ donors at increased risk of infection: systematic review and meta‐analysis},

author = {Karen MJ Waller and Nicole L De La Mata and Patrick J Kelly and Vidiya Ramachandran and William D Rawlinson and Kate R Wyburn and Angela C Webster},

doi = {10.5694/mja2.50315},

issn = {1326-5377},

year  = {2019},

date = {2019-11-00},

urldate = {2019-11-00},

journal = {Medical Journal of Australia},

volume = {211},

number = {9},

pages = {414--420},

publisher = {Wiley},

keywords = {General Medicine, MODUS},

pubstate = {published},

tppubtype = {article}

}

@article{Hedley2019b,

title = {Weekend effect: analysing temporal trends in solid organ donation},

author = {James A. Hedley and Nicholas Chang and Patrick J. Kelly and Brenda M. Rosales and Kate Wyburn and Michael O'Leary and Elena Cavazzoni and Angela C. Webster},

doi = {10.1111/ans.15015},

issn = {1445-2197},

year  = {2019},

date = {2019-09-00},

urldate = {2019-09-00},

journal = {ANZ Journal of Surgery},

volume = {89},

number = {9},

pages = {1068--1074},

publisher = {Wiley},

abstract = {Research suggests patients treated over weekends experience poorer outcomes. Only one US‐based study explored this weekend effect in organ donation, specifically the kidney discard rate. In Australia potential donors are referred to a donation service, and donation proceeds if family consent is granted and the donor is deemed medically suitable to donate. Organ procurement occurs when utilization is almost certain hence discard rates are much lower than in the USA. We aimed to characterize the effect of weekend referral on organ donation in Australia.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>We retrospectively reviewed all New South Wales Organ and Tissue Donation Service logs from 2010 to 2016. Our primary outcome was progression to organ procurement, and secondary outcomes were family consent and meeting medical suitability thresholds. We used logistic regression with random effects adjusting for clustering of referral hospitals.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Of 3496 potential donors referred for consideration, 694 (20%) progressed to organ procurement. There were fewer referrals on weekends (average 415 versus 588 for weekdays). However, donation rates were no lower for weekend compared to weekday referrals (adjusted OR 1.17; 95% CI 0.95, 1.44). Family consent (adjusted OR 1.20; 95% CI 1.00, 1.44) and medical suitability (adjusted OR 1.15; 95% CI 0.96, 1.38) were not lower for weekend compared to weekday referrals. Similar results were found for all sensitivity analyses conducted.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>In Australia, the donation pathway operates consistently throughout the week, with donation no less likely to proceed on weekends and holidays. This finding contrasts with findings in the USA.</jats:p></jats:sec>},

keywords = {General Medicine, Other CODE work, Surgery},

pubstate = {published},

tppubtype = {article}

}