Nationwide survey of adolescents and young adults with end‐stage kidney disease

Abstract

To better understand the health-care needs of adolescents and young adults (AYA) with end-stage kidney disease (ESKD), we sought to describe the demographic characteristics of a national cohort. Data were retrieved from the Australia and New Zealand Dialysis and Transplant Registry. We included all patients aged 15-25 years, living in Australia and receiving renal replacement therapy (RRT) on 31 December 2009. Data included race, aetiology of kidney disease, postal code, transition and migration history. A total of 495 AYA were receiving RRT in Australia giving a prevalence of 143 per million age-related population. Sixty-three per cent had a functioning transplant, 24% were receiving haemodialysis and 13% peritoneal dialysis. Median current age was 22 years (interquartile range (IQR) 19-24). The most prevalent cause of ESKD was glomerulonephritis (33%). The majority of patients lived in capital cities. Indigenous patients were more likely to live in more remote areas. Eighty-five per cent of patients were currently receiving care at an adult unit and 35% of these patients had transitioned from a paediatric unit since starting RRT. The median number of patients per adult unit was 5 (IQR 3-10). The majority of Australian AYA with ESKD are managed in adult units; however, the number at any one unit is low. As most live in the capital cities there may be an opportunity to establish centralized services designed to cater for the needs of AYA patients. However, the needs of patients living in more remote areas, including a significant proportion of Indigenous patients, may not be met by such a model.