M WYLD1,2,3, N DE LA MATA4, SI IM1,4,5, P KELLY4, P MASSON6, A WEBSTER2,4
1Renal Department, The Children’s Hospital at Westmead, 2Renal and Transplant Medicine, Westmead Hospital, 3Sydney Medical School, Faculty of Medicine and Health, The University of Sydney, 4Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, 5Centre for Kidney Research, The Children’s Hospital at Westmead, 6Department of Renal Medicine, Royal Free London NHS Foundation Trust
Aim: Estimate excess deaths and years of life lost(YLL) in children with end-stage kidney disease(ESKD).
Background: Each year 8-13 children pmp develop ESKD in Australia,New Zealand, the US and Europe. Of the many consequences of ESKD, long-term survival has been rated the most important by children and their caregivers. Yet little is known about excess deaths and YLL in this group.
Methods: We included all people who initiated kidney replacement therapy aged ≤18yrs between 1980-2013 using linked data from ANZDATA and national death registers in Australia and New Zealand. We estimated standardised mortality ratios(SMR) by calendar year, and used multistate modelling to estimate life expectancy and YLL compared to the general population.
Results: Among 1,663 patients there were 304(18%) deaths over 21,626 person-years. Most had a pre-emptive kidney transplant(13%) or were transplanted after initiating dialysis(73%). Although excess deaths in our entire cohort initially fell from 40 to 20 times (1980-1999), deaths were relatively stable between 2000-2013 at 20 times in our entire cohort (SMR: 20, 95%CI:16-27) and 16 times in those with kidney transplants (SMR: 16, 95%CI:12-21).
Over time since ESKD, the highest probability of death was during dialysis (6.5%,95%CI:5.4-7.8% at 5-years) followed by during first transplant (1.4%,95%CI:0.9-2.1%). YLL was 30.7(95%CI:25.4-36.1) years in females and 23.9(95%CI: 18.6-29.2) years in males aged 5 at ESKD. This fell to 26.5(95%CI: 21.1-31.9) years in females and 20.3(95%CI: 14.7-25.9) years in males aged 15 at ESKD.
Conclusions: There has been no improvement in excess deaths for children with ESKD over the last 15 years. These children lose an enormous portion of their potential life years, with females and those who develop ESKD at younger ages having the greatest burden of up to 32 YLL.
Melanie is a renal advanced trainee, having trained in nephrology and transplantation at Royal Prince Alfred, Westmead and Westmead Children’s hospitals in Sydney. Her current areas of research include cost, quality of life and outcomes in CKD and kidney transplantation. She was recently awarded her PhD and was an NHMRC postgraduate research scholar. She is a member of the AIHW Chronic Kidney Disease Expert Advisory Group as well as the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) transplant working group. She has a PhD, MBBS, MPH and B.Economics (Hons 1 and University Medal) from the University of Sydney, Australia and an MBA from Stanford University, USA.