The humanistic burden of focal segmental glomerulosclerosis on patients and care-partners in the United States.

Purpose: This study cross-sectionally surveyed patients with primary focal segmental glomerulosclerosis (FSGS) and their caregivers/care-partners, in terms of physical and mental health-related quality of life (HRQoL) and work productivity.

Methods: HRQoL instruments, including the KDQoL-36 (with SF-12 v2), PedsQL (v4.0, parent proxy for children/adolescents), GAD-7 (anxiety), PHQ-9 (depression), and WPAI: SHP (work productivity), were used in the study. Participant characteristics and scores were summarized and compared to an external, kidney disease-free cohort.

Results: 78 adults and 29 children/adolescents with FSGS, with their care-partners/caregivers, were included. The median ages of adults and children/adolescents with FSGS were 44.5 and 12.0 years, respectively; 74.4% and 58.6% were female. Mean physical and mental SF-12 scores for adult patients were 41.9 (SD: 12.1) and 44.8 (10.2), respectively. Both SF-12 components for adult patients, the SF-12 mental component for care-partners, and all PedsQL item scores were worse compared to US general population estimates. Among adult patients, 28.2% reported at least moderate anxiety; 37.3% reported at least moderate depression. Compared to external controls, patients experienced significantly higher severity of anxiety (6.1 vs. 5.0) and depression (7.6 vs. 5.9; both p < 0.0001). Additionally, 14-20% of care-partners and caregivers reported moderate to severe anxiety or depression. All employed groups reported high overall work impairment (15.0-30.6%), with adult patients and their care-partners reporting high FSGS-related activity impairment (37.8%; 17.3%, respectively), absenteeism (10.4%; 6.1%) and presenteeism (21.8%; 11.6%).

Conclusion: Patients with FSGS and their care-partners experience impairments to mental/physical HRQoL and work productivity, underscoring the need for effective FSGS therapies and care-partner support.