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Abstract: TH-PO597

Humanistic Burden of Rare Kidney Diseases: Understanding the Impact of IgA Nephropathy (IgAN) and FSGS on Patients and Care Partners Study (HONUS): Preliminary Results for FSGS in the United States (US)

Session Information

Category: Glomerular Diseases

  • 1402 Glomerular Diseases: Clinical, Outcomes, and Trials


  • Szklarzewicz, Justyna, University Hospitals of Leicester NHS Trust, Leicester, United Kingdom
  • Bensink, Mark Eliot, Travere Therapeutics Inc, San Diego, California, United States

Group or Team Name

  • On Behalf of HONUS Advisory and Study Team Members.

FSGS is known to cause significant clinical and economic burden, however, less is known about the humanistic burden associated with the disease. HONUS is a multi-national, cross-sectional survey study to evaluate humanistic burden of rare kidney diseases, including FSGS.


The study recruited adult patients with their care-partners, and parents of youth (8-17 years) with FSGS or IgAN. The survey collects data on demographic/clinical characteristics, health-related quality of life (HRQoL, 12-Item Short Form Survey [SF-12], PedsQL) and disease impact on employment (Work Productivity and Activity Impairment [WPAI]). This preliminary analysis uses US data collected from FSGS adult patients, their care-partners, and parents of youth with FSGS by April 2023. Data were evaluated descriptively.


The analysis included 76 adult FSGS patients and their care-partners, and 29 parents of youth with FSGS (proxy for pediatric patients). Most patients were Caucasian (adults, 68%; pediatric, 69%) and female (adults, 76%; pediatric, 59%), with a mean age of 44 years (adults) and 12 years (pediatric). Most adult patients were in CKD stages 3-5 (3, 26%; 4, 4%; 5, 25%); 13% had received transplant. For adult patients, mean SF-12 physical and mental component scores (PCS, MCS) were 41.5 and 44.5, respectively, lower (reflecting worse HRQoL) than previously published mean scores (MCS and PCS of 50) for the US general population. Parents of pediatric patients reported a mean total PedsQL (parent proxy) score of 65.8, lower (reflecting worse HRQoL) than previously published scores (parent proxy range: 82-88) for healthy US pediatric populations. Adult patients reported 39% activity impairment and 28% overall work productivity loss due to FSGS-related reasons, while care-partners/parents of adult and pediatric patients reported overall work productivity loss of 15% and 31%, respectively, due to FSGS-related reasons.


Both adult and pediatric patients with FSGS experience impaired HRQoL compared to the US general population, impacting adult work productivity and that of care-partners and parents.


  • Commercial Support – Travere Therapeutics, Inc.