What type of study is this?

This is a Cross-Sectional Study study.

December 8, 2025Open Access

Real-World Patient Characteristics, Burden, and Quality of Life in C3 Glomerulopathy and Primary Immune Complex Membranoproliferative Glomerulonephritis

SNSayna NorouziLoma Linda University Medical Center MHMing‐Yi HuangKaohsiung Medical University KGKathryn GordonUniversity of Leeds

Key Points

Quality of life is significantly affected by fatigue in patients with C3 glomerulopathy and IC-MPGN, reporting scores of 34.7 and 34.9 respectively.
Economic burden among patients shows a notable percentage of those not employed full-time, impacting financial stability.
Multinational cross-sectional survey collected data from patients and treating healthcare professionals regarding their experiences and disease burden.
Healthcare services must address the substantial clinical and economic burden faced by C3G and IC-MPGN patients, particularly regarding caregiver support.

Abstract

Background: C3 glomerulopathy (C3G) and primary immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN) are rare, progressive kidney disorders affecting both children and adults. This real-world study aimed to assess the clinical, economic, and humanistic burden of these conditions in Europe and the United States of America, addressing key evidence gaps. Methods: A large, multinational, cross-sectional survey gathered data from treating healthcare professionals (HCPs) and patients during routine clinical care. Both groups completed surveys reflecting their experiences with C3G or primary IC-MPGN. Results: In C3G 93 physicians returned data for 289 patients, and 52 patients completed a survey themselves, and for primary IC-MPGN 61 physicians returned data for 215 patients, and 54 patients completed a survey themselves. Baseline clinical characteristics and comorbidity rates were similar across both groups. At the time of survey, 81% (C3G) and 89% (primary IC-MPGN) of patients had stable or improving disease. Average 24-hour proteinuria levels were 2.3 g/24h (C3G) and 1.6 g/24h (IC-MPGN). Proteinuria was the most commonly reported symptom by physicians (69% and 56%), while fatigue or low energy was most frequently reported by patients (50% and 53%). Overall, patient-reported FACIT-Fatigue score was 34.7 (C3G) and 34.9 (primary IC-MPGN), on a scale of 0–52 where a higher score indicates better quality of life. On average, patients saw a physician 12.3 (C3G) and 10.7 (IC-MPGN) times in the past year, relating to their C3G/ IC-MPGN. Among adults, 42% (C3G) and 31% (IC-MPGN) were not employed full-time. Caregiver support was reported in 15% (C3G) and 25% (IC-MPGN) of cases. Conclusions: Despite slowly progressing disease in the current cohort, C3G and primary IC-MPGN create a significant clinical, economic and healthcare burden among affected patients and their families.

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