Dr Jessica Sun1, William Sudarmana2, Adriana Gilio2, Breonny Robson3, A/Prof Muh Geot Wong1,4
1Concord Repatriation General Hospital, Concord, Australia, 2Novartis Pharmaceuticals Australia, Macquarie Park, Australia, 3Kidney Health Australia, Kent Town, Australia, 4Concord Clinical School, Faculty of Medicine and Health, University of Sydney, Camperdown, Australia
Biography:
Dr Jessica Sun is a Nephrologist and Renal Supportive Care Fellow at Royal Prince Alfred and Concord Hospitals. She holds a Bachelor of Music Studies and Doctor of Medicine from the University of Sydney, where she is also a Clinical Associate Lecturer. She completed her training at Royal Prince Alfred and Concord Hospitals and was awarded her Fellowship with the Royal Australasian College of Physicians in 2025. She is currently completing the Clinical Foundation in Palliative Medicine. Jessica also serves as the NSW Convenor for the Young ANZSN. Her interests include glomerulonephritis, renal supportive care, and preventative strategies in CKD.
Aim:
To evaluate patient perspectives on the lived experiences and psychosocial impact of C3 glomerulopathy (C3G) in Australia, highlighting the unmet needs of patients living with C3G.
Background:
C3G is an ultra-rare glomerular kidney disease caused by overactivation of the alternative complement pathway. Prognosis is poor with over 80% lifetime risk of kidney failure (KF) and high post-transplant recurrence rates. Currently, there are no approved targeted therapies, and the psychosocial burden of C3G is underreported.
Methods:
Qualitative interviews were conducted with four patients diagnosed with C3G. Disease journeys – including diagnosis, treatment, psychosocial impact, and care gaps – were thematically analysed. A second phase will involve a virtual patient council to further explore patient experiences.
Results:
Participants had a median age of 25 years (IQR 25, 32.5) and were diagnosed at a median age of 21.5 (IQR 16, 25.3). Two patients experienced delayed diagnoses, including one confirmed nine years after symptom onset. All progressed to KF, requiring dialysis and then transplantation. C3G recurred post-transplant in all cases, causing emotional distress and, for three patients, return to dialysis; two received subsequent transplants. The disease and treatment disrupted education, employment, and family life. Other challenges were discontinuity of care during paediatric-to-adulthood transitions, limited specialist knowledge, and access to targeted treatments. Psychological impacts included anxiety, hopelessness, social isolation, and fear of relapse. All reported a lack of support groups, counselling services, and educational resources.
Conclusions:
C3G imposes a significant burden on patients. Earlier diagnosis, coordinated multidisciplinary care, support networks, and access to targeted therapies are urgently needed. Greater awareness among healthcare professionals is essential to improving the care and quality of life for individuals with C3G.