This project will bring adolescents and young adults (AYA) with kidney disease and their carers, together with clinicians, to co-design the future of outpatient care in Metro North. Co-design refers to solutions designed in a participatory manner, in which community members are treated as equal collaborators in the process.

A pilot AYA clinic at the Royal Brisbane and Women's Hospital (RBWH) Kidney Health Service for patients with advanced kidney disease was initiated in September 2022. Despite recommendations for differentiated care, challenges persist in engaging young individuals effectively, as observed in the existing pilot AYA clinic. With only advanced cases covered, there's a need for service improvements to optimise young patient experience and health outcomes. This project, led by Project Manager Alexandra Cation, will employ co-design by patients, carers and clinicians to develop a visionary approach to outpatient care.

Adolescent and Young Adults (AYA) with kidney disease face poorer health outcomes without appropriate care. With limited literature on AYA kidney care, this project aimed to work with young patients and their families to co-design and prioritise clinical service improvements to better reflect their experiences and developmental life stage.
This work identified key themes of AYA kidney care that are critical to both patient and staff experience, which can be used to inform the development and implementation of AYA kidney services.

The highest priorities for our AYA kidney patients are:

·         Mental health and well-being support.
·         Consistent health professionals (meaningful patient-clinician relationship).
·         Prevention and early intervention programs for kidney disease.
·         Post-transplant information.
·         Reducing stigma around drugs/sex/mental health.
·         Empowering patients through education, resources and support.
·         Chronic disease case management services.

Understanding what matters to patients is central to value-based healthcare. Co-design helped us to hear the ideas and experiences of young kidney patients to better understand how to adapt and enhance our services and improve their health outcomes.