Szklarzewicz Justyna, Floege Ute, Gallego Daniel, Gibson Keisha, Kalantar-Zadeh Kamyar, Helm Kelly, Robinson Dale, Schneider Bonnie, Smith Philip, Tullus Kjell, Poyan-Mehr Ali, Hendry Bruce, Balkaran Bridget L, Jauregui Adam K, Wang Aolin, Nason Ian, Hazra Nisha C, Xu Chunyi, Liu Jingyi, Zhou Zheng-Yi, Bensink Mark
University Hospitals of Leicester NHS Trust, Leicester, UK.
University Hospital of the RWTH Aachen University, Aachen, Germany.
Qual Life Res. 2025 Apr 11. doi: 10.1007/s11136-025-03951-w.
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.
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.
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%).
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.
本研究对原发性局灶节段性肾小球硬化症（FSGS）患者及其照料者/护理伙伴进行横断面调查，了解其与身心健康相关的生活质量（HRQoL）和工作效率。
本研究使用了HRQoL工具，包括KDQoL-36（含SF-12 v2）、儿童生活质量量表（PedsQL，v4.0，用于儿童/青少年的家长代理版）、广泛性焦虑量表（GAD-7）、患者健康问卷（PHQ-9）以及工作效率与活动障碍问卷：特定健康问题（WPAI：SHP）。总结了参与者的特征和得分，并与外部无肾脏疾病的队列进行比较。
纳入了78名成年FSGS患者和29名儿童/青少年FSGS患者及其护理伙伴/照料者。成年FSGS患者和儿童/青少年FSGS患者的中位年龄分别为44.5岁和12.0岁；女性分别占74.4%和58.6%。成年患者的SF-12身体和心理平均得分分别为41.9（标准差：12.1）和44.8（10.2）。与美国普通人群估计值相比，成年患者的SF-12两个分量表、护理伙伴的SF-12心理分量表以及所有儿童生活质量量表项目得分均较差。成年患者中，28.2%报告至少有中度焦虑；37.3%报告至少有中度抑郁。与外部对照组相比，患者的焦虑严重程度（6.1对5.0）和抑郁严重程度（7.6对5.9；均p<0.0001）显著更高。此外，14%-20%的护理伙伴和照料者报告有中度至重度焦虑或抑郁。所有就业组均报告总体工作受损程度较高（15.0%-30.6%），成年患者及其护理伙伴报告与FSGS相关的活动受损程度较高（分别为37.8%；17.3%）、旷工率较高（10.4%；6.1%）和出勤主义率较高（21.8%；11.6%）。
FSGS患者及其护理伙伴在心理/身体HRQoL和工作效率方面存在损害，这突出了有效FSGS治疗和护理伙伴支持的必要性。
