Patient and Provider Perspectives on the Patient Journey in Immunoglobulin A Nephropathy

The clinical presentation and disease course of immunoglobulin A nephropathy (IgAN), the most common primary glomerular disease worldwide, vary considerably from patient to patient, often prolonging and complicating the diagnostic process. Additionally, the IgAN treatment landscape is rapidly changing, with ongoing development of numerous new agents targeting the underlying disease mechanism for greater efficacy. The variability of IgAN disease presentation and progression, the often complex path to diagnosis, and the evolving treatment landscape may pose significant challenges for patients and health care providers along the clinical journey. Furthermore, many factors associated with the health care system, providers, and patients may affect IgAN diagnosis, treatment, and management. This report uses the clinical and personal experiences and perspectives of the authors-a nephrologist treating patients with IgAN, an ambulatory nephrology nurse practitioner diagnosed with IgAN, and an ambulatory infusion center nurse practitioner diagnosed with IgAN-to depict the patient journey with this condition from the first clinical presentation through to long-term management. The clinical journey may be improved by increasing provider awareness of IgAN and its patient impact, as well as encouraging self-advocacy among patients.