The Kidney Youth Clinical Advisory Group has helped to develop a program of support for kidney youth as set out in the Kidney Youth Program State of the Nation Report.
An estimated 700 young people between the ages of 18-24 in Australia live daily with end-stage kidney disease. They face unique challenges due to their age and the impacts of chronic illness on their life and development. These include disruption to growth, education, social development and life participation – all of which are exacerbated when they transfer to adult healthcare.
As a result, the kidney youth community face profound impacts on their mental health and wellbeing. This further compounds their physical health, creating poorer medical outcomes and results in massive cots to their quality of life and healthcare. For example, they experience the least favourable kidney transplant outcomes of any age group under 70 – around a third of their kidney transplants fail within five years.
Thanks to a Federal Government grant in 2018, and the valuable contribution of a Clinical Advisory Group below, which was established for the purpose, we launched a consultative process in 2018 and 2019. The goal was to plan programs and resources that would ensure the transition from paediatric to adult healthcare is an easier one. We conducted dozens of surveys, consultations and focus groups to determine what kidney youth and their carers want most from our programs.
The result was a Kidney Youth Program State of the Nation Report, launched in 2019, which can be used to inform the development of support programs and resources to help young people maintain their independence and pursue study and employment opportunities.
This valuable process has already helped to identify gaps in clinical care, establish peer-led support groups and develop more targeted youth resources and services.
A/Prof Shilpa Jesudason, Clinical Director, Kidney Health Australia (Chair)
Dr Thomas Forbes, Paediatric Nephrologist, Royal Children’s Hospital Melbourne VIC
Dr Anna Francis, Paediatric Nephrologist, Queensland Children’s Hospital
Professor Matthew Jose, Nephrologist, Royal Hobart Hospital
Dr Sean Kennedy, Paediatric Nephrologist, Sydney Children’s Hospital
Dr Nick Larkins, Paediatric Nephrologist, Perth Children’s Hospital
Dr Lisa Murphy, Kidney Health Australia GM, Prevention and Advocacy
Stephen Cornish, Kidney Health Australia Youth Program Manager
Luke Macauley, Youth Patient Partner