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Gaia Coppock, MD, Nephrologist and Associate Professor of Clinical Medicine at the University of Pennsylvania, discusses patient experiences with IgA nephropathy (IgAN). IgAN is characterized by the accumulation of IgA antibodies in the kidneys. In the early stages, patients with IgAN have no symptoms. The first sign of this condition may be blood in the urine. End-stage kidney disease may develop if the disease is not treated properly. In most instances, the cause of this condition is unknown; however, certain disorders have been linked with IgAN, such as cirrhosis of the liver, celiac disease, and HIV infection. The condition can also often be triggered by a viral illness. A study presented at GlomCon highlights the experiences and emotions of patients with IgAN throughout different stages of their disease, identifying unmet needs and opportunities to improve patient care and outcomes. A total of 126 patients with biopsy-confirmed IgAN in the US were included in the study. Key findings showed that 88% of patients recalled experiencing symptoms, such as fatigue, hematuria, hypertension, edema, and back/stomach pain before their IgAN diagnosis, but waited an average of 9 months before seeking care with their primary care physician. Patients reported that typically abnormal lab results, rather than symptoms, were the trigger for a referral to a nephrologist, though referral wait times could be up to 12 months. Dr. Coppock explains how the vagueness of symptoms and lack of rare disease education is often the cause of these diagnostic delays. Additionally, many patients leave their appointments feeling confused and wanting clearer guidance and 57% would prefer to receive information about IgAN from their nephrologist. Patients also indicated large gaps between what they value and how current treatments perform, with less than half feeling their current therapies effectively stop symptoms, slow loss of kidney function, delay time to dialysis, and reduce proteinuria. CHAPTERS Introduction 00:00 Long Delays in Diagnosis 00:31 Improving Patient-Physician Communication 1:43 What Physicians Should Know 2:46 What Patients Should Know 3:40 Gaps in Patient Expectations and Treatments 4:26 Improving Patient Experiences 5:20 Take Home Message 5:37

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