OBJECTIVES: Immunoglobulin A nephropathy (IgAN) is a rare kidney disease with an annual incidence of ~25/1000000 worldwide. Approximately 50% of IgAN patients with proteinuria ≥1 g/day progress to kidney failure within 15 years. There are limited published health related quality of life (HRQoL) data from IgAN patients in clinical practice to date, here we report results from a multi-country study and describe patient-reported health utility and QoL split by proteinuria and estimated glomerular filtration rate (eGFR).

METHODS: The Adelphi IgAN Disease Specific Programme was a point-in-time survey of IgAN-treating nephrologists and their patients in France, Germany, Italy, Spain, the UK (EU5), the US, China, and Japan, between June–October 2021. Physicians reported patient demographics and clinical characteristics. Patients completed: EQ-5D-5L (1 = perfect health – 0 = death, US tariff), EQ-VAS (0 worst to 100 best imaginable health) and Kidney Disease QoL (KDQOL; higher scores = better QoL). Patients who answered all of the above were split by proteinuria (P1<1g/day≤P2) and eGFR (G1≥45mL/min/1.73m²>G2), analyses were descriptive.

RESULTS: Overall, 883 patients had matched physician reported proteinuria (536 (P1), 307 (P2)) and 894 eGFR (714 (G1), 136 (G2)) at survey. Mean patient age was 42 years, 56% of patients with matched proteinuria and 57% with matched eGFR were male respectively. Overall mean EQ-5D-5L scores at survey were 0.87 (P1) vs 0.79 (P2), and 0.86 (G1) vs 0.71 (G2). Overall mean EQ-VAS scores were 75.5 (P1) vs 67.5 (P2) and 73.8 (G1) vs 60.0 (G2). Overall mean KDQOL burden of kidney disease scores were 60.1 (P1) vs 46.7 (P2) and 56.9 (G1) vs 39.4 (G2).

CONCLUSIONS: EQ-5D-5L, EQ-VAS and KDQoL results suggest worsening HRQoL and health utility with increasing IgAN severity (higher proteinuria/ lower eGFR) highlighting an unmet burden of disease.