The Humanistic Burden of Focal Segmental Glomerulosclerosis on Patients and Care‑Partners in the United States
Quality of Life Research – 2025
Focal segmental glomerulosclerosis (FSGS) is a group of heterogeneous conditions marked by glomerular lesions and associated with proteinuria, declining kidney function, and increased cardiovascular risk.1-5
Despite the rarity of the condition, the FSGS disease burden is high, as it is the leading glomerular cause of kidney failure (KF) in the United States (US).1,6
The FSGS mortality rate remains poorly characterized, with few studies examining associations between elevated proteinuria, KF status, and cardiovascular disease (CVD) or all-cause mortality events in the US.1
This study assessed the impact of proteinuria on FSGS outcomes, including risk of KF, CVD events, and all-cause mortality.1 It also assessed whether progression to KF predicts higher risk of CVD or all-cause mortality in patients with FSGS.1
A retrospective observational cohort study was conducted using Optum Market Clarity data and FSGS diagnosis terms derived from natural language processing (NLP) data.1
Adults with ≥2 FSGS-related entries (ICD-10 or NLP terms) between 2007-2021 were included.1
Three subcohorts were analyzed to evaluate associations between1:
An exploratory subcohort was also analyzed to assess healthcare costs of FSGS.1
Elevated proteinuria was associated with worse outcomes1:
Progression to KF was associated with a higher risk of CVD/all-cause mortality events (aHR: 3.04).1
Disease progression, nephrotic syndrome events, and CVD events were associated with significant incremental healthcare costs.1
Elevated proteinuria and progression to KF were associated with a higher mortality rate for FSGS and increased cardiovascular risk in FSGS.1
Treatments that meaningfully reduce proteinuria and slow kidney function decline may help lower the risk of KF, CVD, and early mortality in patients with FSGS.1
aHR, adjusted hazard ratio; CVD, cardiovascular disease; FSGS, focal segmental glomerulosclerosis; ICD-10, International Classification of Diseases, 10th Revision; KF, kidney failure; NLP, natural language processing.
MA-DS-25-0052 | June 2025