The Humanistic Burden of Focal Segmental Glomerulosclerosis on Patients and Care‑Partners in the United States
Quality of Life Research – 2025
Lived Experiences of Patients and Care Providers in Focal Segmental Glomerular Sclerosis and IgA Nephropathy
Published on December 19, 2025
Contributors:
Radhakrishnan J, Carlos J, Mauro J et al.
Radhakrishnan J, Carlos J, Mauro J et al.
DOI:
doi.org/10.1159/000550113
doi.org/10.1159/000550113
Summary
The DEFINE study provides insight into the lived experiences of patients with IgA nephropathy or focal segmental glomerulosclerosis (FSGS) and their care providers, including perspectives on disease burden and quality of life1
Background
IgA nephropathy and focal segmental glomerulosclerosis (FSGS) are progressive glomerular conditions that if left untreated, lead to kidney failure and substantial clinical and humanistic burden.1-5
While clinical manifestations of IgA nephropathy (e.g. proteinuria and hematuria) and FSGS (e.g. proteinuria, nephrotic syndrome, edema, and hypertension) are well known, few studies have captured the lived experience of people affected by these conditions.1,4,5
Aim
The DEFINE study evaluated the lived experiences of patients with IgA nephropathy or primary FSGS and their care providers, including the impact on their emotional health and personal and professional lives.1
Approach
DEFINE was a multi-national qualitative study conducted in Germany, Spain, the United Kingdom, and the United States.1
Adults with IgA nephropathy or primary FSGS, care partners of adults, and caregivers of children or adolescents with these conditions were recruited. Of the screened participants, 38 enrolled in the study, 33 completed the pre-task survey, and 26 attended the focus groups.1
A two-phased research design was used1:
- Phase 1: An initial mixed-methods pre-task survey (open-ended and multiple-choice questions)
- Phase 2: A series of virtual focus groups using semi-structured discussion guides
- A thematic analysis of transcripts was used to identify key themes
Findings
Living with IgA nephropathy or FSGS impacted many aspects of daily life1
Patients reported that fatigue disrupted their ability to complete everyday tasks and often required them to schedule recovery time, navigate challenges in their social life due to their condition, and adjust their goals in professional settings.1 Patients felt greater support was needed in these aspects of daily life.1
Patients and care providers reported considerable impact on their social lives1
Both patients and care providers (referring to both care partners and caregivers) reported limitations on their ability to socialize.1 For patients, fatigue and the unpredictability of their condition were the most reported barriers, with some avoiding social engagements altogether.1 In contrast, most care providers described additional challenges such as putting the needs of the person they were caring for above their own.1
Both patients and care providers encountered challenges in their professional lives1
Patients and care providers frequently reported reducing work hours or leaving employment due to IgA nephropathy or FSGS. Patients reported the need for these changes due to fatigue and medical appointments, while care providers reported increasing caregiving demands.1 Many also experienced financial strain from reduced household income and added costs such as home dialysis, increased price of suitable foods, and travel.1
The emotional and psychological burden on patients and care providers was substantial1
Both patients and care providers reported feelings of sadness, depression, fear, uncertainty, and anxiety, as well as feelings of being overwhelmed.1 Patients often felt overwhelmed by disease management, reduced ability to perform daily tasks, and uncertainty about disease progression, while care providers described sadness and uncertainty for the future as they watched the person they care for manage a progressive condition.1
Patients and care providers highlighted the value of peer and specialist healthcare professional (HCP) support and the importance of self-advocacy1
Key takeaway
The impact of IgA nephropathy and FSGS extends beyond clinical symptoms.1-3 In the DEFINE study, both patients and care providers reported substantial impacts on their emotional health and personal, professional, social, and daily lives, with fatigue being the most frequently discussed issue.1 Patients and care providers emphasized the need for greater support in these qualitative aspects of their lives and additionally noted that collaboration among HCPs, industry, and patient organizations could contribute to improved outcomes and quality of life.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; HCP, healthcare professional; IgA, immunoglobulin.
- Radhakrishnan J et al. Glomerular Dis. 2025;6(1):36-51.
- Szklarzewicz J et al. Qual Life Res. 2025;34(2):353-363.
- Szklarzewicz J et al. Qual Life Res. 2025;34(7):1925-1937.
- Berthoux FC et al. Semin Nephrol. 2008;28(1):4-9.
- Rout P et al. Focal Segmental Glomerulosclerosis. In: StatPearls [Internet], 2026.
MA-DS-26-0015 | April 2026