Life Years Lost in Children with Kidney Failure: A Binational Cohort Study with Multistate Probabilities of Death and Life Expectancy.

BACKGROUND: 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.

METHODS: 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.

RESULTS: 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.

CONCLUSIONS: 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.