Same Disease, Different Stories: Contrasting Patient and Physician Perspectives in IgAN

Background: IgA nephropathy (IgAN) is a kidney disease caused by buildup of immunoglobulin A (IgA) in the kidneys. It often progresses slowly and has no cure, though new targeted treatment options can help slow its progression. This research explores the differences in perspectives between treated patients and their physicians to identify opportunities to enhance patient care. Methods: The patient perspective was captured through an online survey of 127 IgAN patients fielded 2/7/25-3/2/25. The physician perspective was collected via an online survey of 177 nephrologists fielded from 1/6/25-2/6/25, and 507 patient charts. Both surveys were HIPAA-compliant and data was analyzed by the Spherix analytics team. Results: Nephrologists and patients are closely aligned when it comes to evaluating several aspects of their disease. Both report similar perceptions of disease severity and the impact IgAN has on their quality of life. Nephrologists classify 12% of their patients as severe, vs. 19% self-reported by patients, and consider 23% of their patients to have a “poor” quality of life, vs. 19% self-reported by patients. There are also similarities in the most reported symptoms (i.e., blood in urine, fatigue, edema) and the degree to which patients are adherent to their treatment regimens (74% of nephrologists report that patients are highly adherent vs. 80% of patients). Despite similarities, perspectives of nephrologists and patients differ on patient’s overall health assessment and the number/types of secondary symptoms reported. While nephrologists consider their IgAN patients to be healthy (rating 100% in good or excellent health), only 52% of patients consider themselves healthy, with 48% reporting their health as fair or poor. Additionally, nephrologists report that patients have few symptoms beyond their CKD and IgAN – saying that 34% do not have any other co-morbid conditions, while virtually all patients report additional symptoms, with just 1% not identifying any others. The symptoms nephrologists are likely to overlook include pain (reported by 32% of patients vs. 9% of nephrologists) and polyuria/nocturia (reported by 31% of patients vs. 8% of nephrologists). Conclusion: The gaps in perspectives between patients and physicians highlight a need for enhanced communication and education aimed at patients to help them better understand their disease and treatment options.