Dr Jessica Sun1, William Sudarmana2, Adriana Gilio2, Breonny Robson3, A/Prof Muh Geot Wong1,4
1Concord Repatriation General Hospital, , 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 experience and psychosocial impact of IgA nephropathy (IgAN) in Australia, including identifying key unmet needs. Background: IgAN is the most common glomerulonephritis globally, with a variable clinical course and up to 50% risk of kidney failure (KF). Emerging therapies are being developed for IgAN, however, the humanistic burden of the disease remains underexplored.
Methods:
Qualitative interviews were conducted with five patients diagnosed with IgAN, to explore their experiences across diagnosis, treatment, psychosocial impact, and care gaps. A forthcoming virtual patient council will provide further insights into their experiences.
Results:
Participants had a median age of 54 years (IQR 33, 55) and were diagnosed at a median age of 42 (IQR 31, 48). Patients reported a range of clinical presentations, from asymptomatic microhaematuria and/or proteinuria, to rapidly progressive disease requiring dialysis and transplantation in two cases. Some experienced diagnostic delays and difficulties accessing specialist care, particularly one patient who lived in a regional area. All underwent kidney biopsies for diagnosis. Treatment included RAAS blockade, SGLT2 inhibitors, glucocorticoids and experimental drugs. Limited access to effective targeted therapies was a common challenge. Psychosocial impacts of the disease included fatigue, dietary restrictions, anxiety, and isolation. Patients highlighted the emotional toll of dialysis, uncertainty around transplant outcomes, and fear of disease recurrence. All emphasised the need for patient forums, counselling, and educational resources to better understand and cope with their disease.
Conclusions:
IgAN has a significant burden on all aspects of patients’ lives. Enhancing specialist access, improving education and psychosocial support, and access to upcoming treatment options are critical in optimising both outcomes and quality of life in patients with IgAN.