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

ABSTRACT:

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;

SUBMITTER: Szklarzewicz J 

PROVIDER: S-EPMC12182477 | biostudies-literature | 2025 Jul

REPOSITORIES: biostudies-literature