A patient-experience survey presented at GlomCon 2026 found that people with IgA nephropathy (IgAN) want more than reassurance. They want to understand what is happening in their bodies, why treatment decisions are being made, and what may come next. The study combined 20 qualitative interviews with a 106-patient survey and highlighted persistent communication gaps across the IgAN journey. Gaia Coppock, MD, emphasized the value of giving patients a clear roadmap that explains possible disease progression, treatment choices, and even difficult possibilities such as kidney failure or transplantation, rather than relying on reassurance alone.
The findings reinforce the value of shared decision-making and communication tailored to each patient’s needs and level of understanding. Involving patients in treatment and lifestyle choices, encouraging family participation when appropriate, and directing patients to vetted IgAN-specific resources may help them feel more informed and engaged in their care. The broader takeaway is that clear explanations of both the “what” and the “why” behind management decisions can help patients better understand their disease and navigate an often complex and uncertain treatment journey.
Reference: Coppock G. Personalizing IgA nephropathy care conversations, with Gaia Coppock, MD. HCP Live. Published September 10, 2026. Accessed September 17, 2026.https://www.hcplive.com/view/personalizing-iga-nephropathy-care-conversations-with-gaia-coppock-md
Link: https://www.hcplive.com/view/personalizing-iga-nephropathy-care-conversations-with-gaia-coppock-md
