V KHOU2, N DE LA MATA1, RL MORTON3, AC WEBSTER1,4
1Sydney School Of Public Health, The University Of Syd, Camperdown, Australia, 2Sydney Medical School, The University of Sydney, Camperdown, Australia, 3NHMRC Clinical Trials Centre, The University of Sydney, Camperdown, Australia, 4Centre for Renal and Transplant Research, Westmead Hospital, Westmead, Australia
Aim: To describe mortality after treatment withdrawal, and evaluate legal causes of death in people with end-stage kidney disease (ESKD).
Background: End-of-life care provision is increasingly important but service-planning is challenging without population-specific data. Clinical quality registries like ANZDATA may provide more useful and accurate data than administrative datasets.
Methods: We included incident ESKD patients in Australia, 1980-2013 and New Zealand, 1988-2012.Treatment withdrawal deaths were identified from ANZDATA. Legal primary and secondary causes of death were ascertained from data linkage with national death registries. Mortality rates were estimated by dividing deaths by person-years of follow-up, by age, sex and calendar year.
Results: Of 60,823 ESKD patients, there were 8,111 treatment withdrawal deaths and 26,207 other deaths over 381,874person-years. Mortality rates from treatment withdrawal were generally higher in females compared to males and increased with age, from 722 (95%CI:634-823) in females and 507 (95%CI:444-579) in males aged 30-49years to 3,093 (95%CI:2926-3270) in females and 2550 (95%CI:2418-2689) in males aged 65-74years per 100,000person-years. Rates also increased over time, from 898 (95%CI:738-1094) in 1988 to 3274 per 100,000person-years (95%CI:2748-3902) in 2012. Only 20% of treatment withdrawal deaths had kidney failure (20%) as the primary registered cause of death. Other legal causes of death after treatment withdrawal included diabetes (21%), hypertensive disease (7%), coronary heart disease (7%) and glomerular disease (6%). A further 45% listed renal failure as a secondary cause of death, but no mention was made of kidney disease for 35%.
Conclusions: Treatment withdrawal is most common in older females, representing 24% of all ESKD deaths and rates have more than tripled since 1988. Reliance on administrative data and death certification may grossly underestimate care-burden.
Nicole De La Mata is an early career researcher and biostatistician working with Sydney School of Public Health, The University of Sydney. She has previous experience in managing and utilizing large observational cohorts to evaluate patient outcomes and influence health policy. Her interests include cohort studies, data linkage and survival analysis. Her current research focuses on health outcomes in people with end-stage kidney disease (ESKD), living kidney donors and organ transplant recipients.