Personalizing IgA Nephropathy Care Conversations, With Gaia Coppock, MD

A new patient-experience survey in IgA nephropathy (IgAN), presented at GlomCon 2026, found most patients want more than reassurance from their care team. They want a clear roadmap for what to expect next.

"Most people with a rare kidney disease really want to know where we are and where we are going," said Gaia Coppock, MD, associate professor of clinical medicine in the University of Pennsylvania's Division of Renal-Electrolyte and Hypertension and director of the Glomerular Disease Clinical Research Program at the Hospital of the University of Pennsylvania, in an interview with HCPLive. "Even being able to define that, be open about it, and give a roadmap for what might happen if that is where they end up going can be helpful. It takes away some of the fear."

The survey, sponsored by Vertex Pharmaceuticals and presented in Maui, Hawaii, combined 20 qualitative interviews with a 106-patient quantitative survey to characterize unmet communication needs across the IgAN journey.¹

Coppock said her academic practice gives her more time than many nephrologists have to walk new patients through what to expect, even when a first visit only partly sinks in. "I like to explain why I'm making the choices that I'm making," she said. "People really want to know what's going on in their bodies."

She also involves patients directly in decisions, including lifestyle changes, so they can take ownership rather than simply being told what to do. For online information, Coppock points patients toward vetted, IgAN-specific resources such as the IgA Foundation, IgAN Alliance, and NephCure, which offer support groups, patient forums, and conference listings.

Even with a rare diagnosis, Coppock said most patients want an honest picture of where the disease could go, including the possibility of progression to kidney failure or transplant, rather than reassurance alone. This preference echoes prior research, which has identified similar unmet information gaps among patients with IgAN more broadly.²

References:

1. Bensouda M, Wade B, Burns J, et al. IgA Nephropathy Patient Experience: A Qualitative and Quantitative Mixed-Methodology Study. Poster presented at: GlomCon 2026; August 3-7, 2026; Maui, HI.
2. Vasilica C, Oates T, Clausner C, Ormandy P, Barratt J, Graham-Brown M. Identifying information needs of patients with IgA nephropathy using an innovative social media–stepped analytical approach. Kidney Int Rep. 2021;6(5):1317-1325.

Editor’s Note: Coppock reports relevant disclosures with Aurinia Pharmaceuticals and Travere Therapeutics.

References

1. Bensouda M, Wade B, Burns J, et al. IgA Nephropathy Patient Experience: A Qualitative and Quantitative Mixed-Methodology Study. Poster presented at: GlomCon 2026; August 3-7, 2026; Maui, HI.

2. Vasilica C, Oates T, Clausner C, Ormandy P, Barratt J, Graham-Brown M. Identifying information needs of patients with IgA nephropathy using an innovative social media–stepped analytical approach. Kidney Int Rep. 2021;6(5):1317-1325.