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

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Title: The humanistic burden of focal segmental glomerulosclerosis on patients and care-partners in the United States.
Authors: Szklarzewicz, Justyna (AUTHOR), Floege, Ute (AUTHOR), Gallego, Daniel (AUTHOR), Gibson, Keisha (AUTHOR), Kalantar-Zadeh, Kamyar (AUTHOR), Helm, Kelly (AUTHOR), Robinson, Dale (AUTHOR), Schneider, Bonnie (AUTHOR), Smith, Philip (AUTHOR), Tullus, Kjell (AUTHOR), Poyan-Mehr, Ali (AUTHOR), Hendry, Bruce (AUTHOR), Balkaran, Bridget L. (AUTHOR), Jauregui, Adam K. (AUTHOR), Wang, Aolin (AUTHOR), Nason, Ian (AUTHOR), Hazra, Nisha C. (AUTHOR), Xu, Chunyi (AUTHOR), Liu, Jingyi (AUTHOR), Zhou, Zheng-Yi (AUTHOR)
Source: Quality of Life Research. Jul2025, Vol. 34 Issue 7, p1925-1937. 13p.
Subjects: Focal segmental glomerulosclerosis, Quality of life, Caregivers, Mental depression, Kidney diseases, Patient care, Anxiety
Geographic Terms: 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; 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. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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  Data: The humanistic burden of focal segmental glomerulosclerosis on patients and care-partners in the United States.
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  Data: &lt;searchLink fieldCode=&quot;JN&quot; term=&quot;%22Quality+of+Life+Research%22&quot;&gt;Quality of Life Research&lt;/searchLink&gt;. Jul2025, Vol. 34 Issue 7, p1925-1937. 13p.
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  Data: 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 &lt; 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. [ABSTRACT FROM AUTHOR]
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  Data: &lt;i&gt;Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder&#39;s express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.&lt;/i&gt; (Copyright applies to all Abstracts.)
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