Ms Alexandra Cation1, Ms Fiona Cullimore2, Dr Brian Doucet1,3, Mr Jack Gardiner2, Ms Lorraine Garry1, A/Professor Helen G Healy1,3, Ms Rachel Latimore4, Ms Claire Lee5, Dr Monica Suet Ying Ng1,3, Dr Louise Purtell6, Ms Holly Mchenery-Wakelin2, Dr Angela White7,8, Ms Grace Woodford2, Ms Brianna McCoola9
1Kidney Health Service, Royal Brisbane and Women’s Hospital, Herston, Australia, 2Consumer, Royal Brisbane and Women’s Hospital, Herston, Australia, 3Faculty of Medicine, University of Queensland, Herston, Australia, 4Consumer and Community Engagement, Metro North Hospital and Health Service, Herston, Australia, 5Mater, South Brisbane, Australia, 6Centre for Allied Health Research, Royal Brisbane & Women’s Hospital, Herston, Australia, 7Department of Psychology, Royal Brisbane & Women’s Hospital, Herston, Australia, 8School of Psychology, University of Queensland, Herston, Australia, 9Queensland Department of Health, South Brisbane, Australia
Biography:
Holly Mchenery-Wakelin is a Consumer Co-Lead on the Adolescent and Young Adult Kidney Co-design Project at the Royal Brisbane and Women’s Hospital (RBWH). Born in New Zealand, Holly was diagnosed with kidney disease at two years of age. Since moving to Australia in 2022 and receiving a live donor kidney transplant from her mum in 2024, Holly has become an advocate for raising awareness of kidney disease and improving services for young people.
Dr Monica Ng is a nephrologist and clinician scientist at the Royal Brisbane and Women’s Hospital. She was awarded her PhD from the University of Queensland in 2019. Since then, her research has focused on the clinical application of extracellular vesicles for kidney disease diagnostics; kidney disease epidemiology and management of chronic kidney disease. She currently leads the Translational Kidney Pathobiology group at the Royal Brisbane and Women’s Hospital Kidney Health Service.
Aim:
To improve the health outcomes of adolescents and young adults (AYA) with kidney disease by co-designing clinical services to better reflect their experiences and developmental life stage.
Background:
Young people with kidney disease face poorer health outcomes without developmentally appropriate care. With limited literature on AYA kidney care, we worked with young patients and their families to co-design and prioritise service improvement initiatives.
Methods:
The Australian Experienced Based Co-Design methodology was integrated with an Appreciative Inquiry framework to guide the co-design process. The co-design team comprised six consumer co-leads and nine staff. Consumer and research co-leads jointly co-planned and co-facilitated consumer and staff workshops, thematic analysis, interpretation of results, and modified Delphi-style ranking of initiatives.
Results:
The co-design team identified and prioritised 94 initiatives to improve the delivery of AYA kidney care in an adult hospital. Key themes were: 1. Accessibility (flexibility, digital, transport, financial, services, equipment); 2. Model of care (multidisciplinary, case management and care coordination, preventative, peer workers, peer support, sustainability); 3. Communication (clinician-patient relationship, ad-hoc communication channels, health decision-making); 4. Information (service choice, kidney-specific information, personalised information); and 5. Education (patient programs, early and ‘bite-sized’ education, AYA-focussed clinical education, cultural safety). The highest priorities for AYA patients were: mental health and well-being support; consistent health professionals; prevention and early intervention programs; post-transplant information; reducing stigma around drugs/sex/mental health; empowering patients through education, resources and support; and chronic disease case management services.
Conclusions:
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 our services and improve their health outcomes.