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The Humanistic Burden of Focal Segmental Glomerulosclerosis on Patients and Care‑Partners in the United States

Journal article
Published on April 11, 2025

Topics:

Nephrology FSGS
Contributors:
Szklarzewicz J, Floege U, Gallego D et al.
Name of Journal:
Quality of Life Research


View Publication
DOI:
10.1007/s11136-025-03951-w
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Summary

Understanding the humanistic burden of focal segmental glomerulosclerosis (FSGS) on patient and care-partner quality of life1


Background

Focal segmental glomerulosclerosis (FSGS) is a rare, progressive kidney condition marked by scarring of the glomeruli, commonly leading to kidney failure.1,2 While the clinical and economic burden of FSGS is increasingly recognized, the full humanistic burden — particularly among caregivers (care-partners) — has largely remained underexplored.1 This study addresses this gap by evaluating quality of life (QoL), mental health, and work productivity among individuals with FSGS and their care-partners in the US.1


Aim

This study aims to quantify the humanistic burden of FSGS in the US from the perspectives of affected adults, pediatric patients (via caregiver proxy), and their care-partners.1


Approach

This cross-sectional analysis used data from the Humanistic Burden of Rare KidNey Diseases: Understanding the impact of FSGS and IgAN on Patients and Caregivers Study (HONUS). HONUS enrolled adults with primary IgA nephropathy or FSGS, their care-partners, and adult caregivers of children/adolescents with primary IgA nephropathy or FSGS from the US, Spain, United Kingdom, Germany, and France.1,3

Participants were assessed with health-related quality of life (HRQoL) instruments, including1:

  • Kidney Disease Quality of Life Instrument (KDQoL-36, for adults), with Short Form Survey (SF-12)
  • Pediatric Quality of Life Inventory (PedsQL, for children/adolescents via caregiver/parent proxy)
  • Generalized Anxiety Disorder Assessment (GAD-7)
  • Patient Health Questionnaire-9 (PHQ-9)
  • Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP)

Comparisons of outcomes were performed between the HONUS FSGS cohort and weighted external controls from the 2023 US National Health and Wellness Survey (NHWS).1


Findings

Greater impairment in HRQoL, increased rates of anxiety and depression, and worse work/activity impairment were seen in patients with FSGS compared to external controls1

Impaired QoL1

  • Adults with FSGS reported a lower physical component summary (PCS: 41.9) and mental component summary (MCS: 44.8) SF-12 scores vs. the general population
  • Children/adolescents with FSGS (proxy-reported) had significantly worse PedsQL scores across all domains compared with previously published scores in a general pediatric US population

Impact of FSGS on mental health and physical health1

  • 28.2% of adults with FSGS reported moderate to severe anxiety, and 37.3% reported moderate to severe depression
  • In the two weeks prior to the survey, care-partners of adult patients and caregivers of pediatric patients experienced moderate to severe anxiety (14.3% and 13.8%, respectively) and moderate to severe depression (14.3% and 20.7%, respectively)
  • Fear and uncertainty about the future affected nearly all adult patients (96.1%) and 82.8% of children/adolescents with FSGS
  • Bone/joint pain, headache, and facial swelling were the most burdensome symptoms reported by adult patients with FSGS

Significant FSGS-related work productivity impairment1

  • Adults with FSGS reported 26.7% overall work impairment and 37.8% activity impairment due to FSGS
  • Care-partners of adult patients and caregivers of pediatric patients reported 15.0% and 30.6% overall work impairment due to FSGS-related reasons, respectively

Key takeaway

FSGS significantly impairs QoL for both patients and care-partners, with notable mental health and work productivity consequences.1 These findings underscore the urgent need for more effective therapies and structured care-partner support for FSGS.1


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Footnotes

This study was funded by Travere Therapeutics, Inc. Please see the publication for the full list of disclosures.

FSGS, focal segmental glomerulosclerosis; GAD-7, Generalized Anxiety Disorder 7-item scale; HONUS, Humanistic Burden of Rare KidNey Diseases: Understanding the impact of FSGS and IgAN on Patients and Caregivers Study; HRQoL, health-related quality of life; KDQoL-36, Kidney Disease Quality of Life Instrument; MCS, mental component summary; NHWS, National Health and Wellness Survey; PCS, physical component summary; PedsQL, Pediatric Quality of Life Inventory; PHQ-9, Patient Health Questionnaire-9; SF-12, Short Form Survey; WPAI:SHP, Work Productivity and Activity Impairment: Specific Health Problem.

  1. Szklarzewicz J et al. Qual Life Res. 2025;34(7):1925-1937.
  2. Rosenberg AZ et al. Clin J Am Soc Nephrol. 2017;12(3):502-517.
  3. Szklarzewicz J et al. Presented at: American Society of Nephrology Kidney Week 2021; November 4-7, 2021; San Diego, CA, United States. PO1479.

MA-DS-25-0062 | September 2025