#5424 symptom control with currently available immunoglobulin a nephropathy treatment: results from a real-world survey in eight countries

Abstract Background and Aims Immunoglobulin A nephropathy (IgAN) is the most prevalent form of primary glomerulonephritis worldwide with an estimated annual incidence of 25 cases per million people. Many patients are not diagnosed until they develop kidney dysfunction, such as hematuria and proteinuria. Proteinuria >1g/day is associated with a high risk of progression. The aim of the present study is to describe symptom control and consider treatment satisfaction for patients undergoing treatment for IgAN. Method Data were drawn from the Adelphi IgAN Disease Specific Programme (DSP)™, a point-in-time survey of IgAN-treating nephrologists and their consulting patients conducted in the United States (US), Europe (EU5: France, Germany, Italy, Spain, United Kingdom [UK]), Japan, and China, from June to October 2021. Nephrologists completed structured online patient record forms for successive patients presenting with IgAN including demographics, clinical characteristics and treatment patterns. Patients voluntarily completed questionnaires that corresponded with the nephrologist records, with questions about their IgAN on that day regarding symptoms experienced, disease severity, and treatment satisfaction. Patients who were receiving IgAN treatment at the time of survey are included in the presented analysis. Results The mean (standard deviation [SD]) age of patients (n = 869) was 42 (13.7) years and 57% were male. IgAN symptoms were deemed severe by 10% of patients at the time of survey and 14% before the initiation of their current treatment. Overall, 91% of patients reported having symptoms of IgAN at the time of survey, the most common were: foamy urine, feeling tired or lack of energy, and swelling, with many patients in China reporting hematuria. The top reported most bothersome symptoms were fatigue, swelling, and high blood pressure, with many patients in China also reporting proteinuria. Satisfaction with their current treatment was reported by patients; 61% reported that they were satisfied, 27% said they were neither satisfied or dissatisfied, and 12% said they were dissatisfied with their medication. This dissatisfaction was due to their current medication not working quickly enough (54%, n = 103) or that it had not helped with their IgAN symptoms (45%, n = 103). This was consistent with the physician-reported data; where proteinuria was reported across treatment lines (L), levels remained high amongst patients (mean (SD) proteinuria [g/day] at L1: 2.2 (2.3), n = 629; L2: 1.8 (2.0), n = 257; L3: 1.9 (1.4), n = 95) and estimated glomerular filtration rate (eGFR) continued to fall (mean (SD) eGFR [mL/min/1.73m2] at L1: 77.1 (29.6), n = 615; L2: 72.2 (30.3), n = 246; L3: 66.9 (31.1), n = 96). Conclusion Despite treatment, most patients with IgAN continued to experience symptoms. Many of these symptoms were considered bothersome by patients, including fatigue, swelling and high blood pressure which may have an impact on their everyday lives. These data highlight an unmet need for effective IgAN management and future treatments should aim to target better symptom relief and disease progression.