Abstract: FR-PO0662
Humanistic Burden of FSGS: Findings from a Systematic Review
Session Information
- Glomerular Diseases: Clinical, Outcomes, and Therapeutics Research - ANCA/FSGS
October 23, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics
Authors
- Vuvu, Fiston, Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Min, Jinny, Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Pierre, Vicki, Tantalus Medical Communications Ltd, Vancouver, British Columbia, Canada
- Reinhart, Marcia, Tantalus Medical Communications Ltd, Vancouver, British Columbia, Canada
- Huang, Mingyi, Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Ayehu, Gashu H., Apellis Pharmaceuticals Inc, Waltham, Massachusetts, United States
- Salmon, Eloise, University of Michigan, Ann Arbor, Michigan, United States
- Peipert, John Devin, University of Birmingham, Birmingham, England, United Kingdom
Background
Focal segmental glomerulosclerosis (FSGS) is a heterogeneous disease that can lead to progressive kidney damage culminating in failure, with over half of patients with nephrotic-range proteinuria progressing to end-stage kidney disease within 10 years in the absence of effective treatment. The objective of this systematic review was to identify evidence describing the humanistic burden of FSGS.
Methods
The review included searches of the MEDLINE and Embase databases in January 2026 (no date restriction) and several congresses from the prior 2 years. Searches used terms related to FSGS, health-related quality of life (HRQoL), patient-reported outcomes, and caregiver burden. Eligible studies were published in English and reported humanistic burden data in adult or pediatric FSGS populations across any region worldwide. Although the focus was on observational data, interventional studies could be included if they reported relevant baseline or placebo-group data.
Results
A total of 246 articles were screened by 2 independent researchers by title and abstract. After subsequent full-text review, 11 references reporting humanistic burden data from 8 unique studies were included. Adult patients with FSGS consistently reported negative impacts to both physical and mental HRQoL scores including the 12- and 36-item Short Form Survey (SF-12/-36) physical and mental component scores, with ranges of 40.6–44.3 and 43.8–44.8, respectively (vs. general population average of 50.0). Pediatric patients assessed by the Pediatric Quality of Life Inventory reported total scores of 65.8 and 76.0, lower than general populations’ scores (81-84) with negative impacts across most domains, including physical, psychosocial, emotional, and school item scores. Swelling, fatigue, pain, and the effects of medications were among the more substantial contributors to negative physical health burden, and many patients were identified as having moderate or severe anxiety and/or depression. Caregivers of both adult and pediatric patients reported notable impacts to their own mental health scores along with feelings of fear and uncertainty for the future.
Conclusion
This review highlights the multifaceted burden of FSGS, underscoring the need for a patient-centered approach that addresses mental health and symptom management to improve the quality of life for both patients and their caregivers.
Funding
- Commercial Support – Apellis