Kidney transplant recipient, Holly with RBWH Kidney Health Services Project Manager Alexandra Cation
22-year-old kidney transplant recipient, Holly is involved in a groundbreaking new co-design project, funded by the RBWH Foundation and led by RBWH Kidney Health Services, to address higher rates of transplant failure by improving healthcare for adolescents and young adults (AYA) living with chronic kidney disease.
“It is not easy living with chronic kidney disease,” said Holly. “When I was a teenager, I just wanted to forget I was sick, I wanted to do all the things my friends were doing.”
RBWH Kidney Health Services Project Manager Alexandra Cation said nine young people and 21 health professionals were involved in the co-design project, which had come up with 94 recommendations on young adult kidney care.
Alexandra said without differentiated care for younger patients, outcomes for them were at risk.
“If young people aren’t engaged properly in their own care, especially when transitioning out of the paediatric system into adult care, it can have devastating health impacts,” said Ms Cation.
“If they don’t take their medication or stick to necessary lifestyle modifications, up to 35 per cent of young people lose their transplant within three years of transitioning into adult services.”
The Kidney Health Service commenced a pilot AYA clinic for patients with advanced kidney disease in September 2022. The clinic is currently limited to patients with advanced disease and continues to face challenges understanding how to best engage young people in their care.
Employing a co-design methodology, this project will develop a vision of how care should be delivered. It will directly inform the development of responsive and tailored services that support and optimise the well-being of young people with advanced kidney disease.
“The only way we can really find out what young people need is by asking them and we couldn’t have done that without the RBWH Foundation’s support,” Alexandra said.
“We have really learned a lot about the power of peer support. They’re so passionate about helping other young people who might be at a different stage in their journey with their kidney disease and sharing what they’ve learned.”
To support this and many more initiatives like it, click here to donate to the RBWH Foundation.