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 Feb;34(2):353-363. doi: 10.1007/s11136-024-03813-x. Epub 2024 Oct 26.
This cross-sectional survey study quantified the humanistic burden of immunoglobulin A nephropathy (IgAN), in terms of physical and mental health-related quality of life (HRQoL) and work productivity, among adults with primary IgAN and their care-partners.
HRQoL was assessed (01/31/22 - 05/31/23) with validated tools including the KDQoL-36 (with SF-12), GAD-7 (anxiety), PHQ-9 (depression), and WPAI: SHP (work productivity). Participant characteristics and total/domain scores were summarized; selected outcomes were compared to an external, kidney disease-free cohort.
117 adults with IgAN and their care-partner pairs, and one adult without a care-partner, were included. The mean ages of patients and care-partners were 38.0 (SD: 8.6) and 40.2 (11.8) years, respectively; 55.9% and 43.6% were female. Mean physical and mental SF-12 scores for patients were 46.7 (SD: 8.0) and 41.9 (9.2), respectively, and 50.7 (7.3) and 43.7 (10.24) for care-partners. Both SF-12 components for patients, and the mental component for care-givers, were significantly worse compared to the US general population. Among patients, 27.1% had moderate/severe anxiety and 49.2% reported at least moderate depression. Compared to external controls, patients experienced significantly higher severity of anxiety (6.6 vs. 5.4) and depression (8.1 vs. 6.6; both p < 0.0001). Among care-partners, 13.7% experienced moderate anxiety and 37.8% experienced moderate/moderately-severe depression. Among employed individuals, both groups reported IgAN-related absenteeism (8.8-9.4%), presenteeism (25.1-25.9%), and overall work impairment (30.4-30.5%).
US adults with IgAN and their care partners experience impairments to mental and physical HRQoL and heightened levels of depression and anxiety, underscoring the need for effective IgAN therapies and care-partner support.
这项横断面调查研究量化了原发性免疫球蛋白A肾病（IgAN）成年患者及其护理伙伴在身心健康相关生活质量（HRQoL）和工作生产力方面的人文负担。
采用KDQoL-36（含SF-12）、GAD-7（焦虑）、PHQ-9（抑郁）和WPAI：SHP（工作生产力）等经过验证的工具评估HRQoL（2022年1月31日至2023年5月31日）。总结参与者特征及总分/领域得分；将选定结果与外部无肾病队列进行比较。
纳入了117名患有IgAN的成年患者及其护理伙伴对，以及1名无护理伙伴的成年患者。患者和护理伙伴的平均年龄分别为38.0岁（标准差：8.6）和40.2岁（11.8）；女性分别占55.9%和43.6%。患者的SF-12身体和心理平均得分分别为46.7（标准差：8.0）和41.9（9.2），护理伙伴的得分分别为50.7（7.3）和43.7（10.24）。与美国普通人群相比，患者的SF-12两个维度得分以及护理者的心理维度得分均显著更差。在患者中，27.1%有中度/重度焦虑，49.2%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（6.6对5.4）和抑郁严重程度（8.1对6.6；均p<0.0001）显著更高。在护理伙伴中，13.7%有中度焦虑，37.8%有中度/中度重度抑郁。在就业个体中，两组均报告有与IgAN相关的旷工（8.8 - 9.4%）、出勤主义（25.1 - 25.9%）和总体工作受损（30.4 - 30.5%）。
美国患有IgAN的成年患者及其护理伙伴在身心健康相关生活质量方面存在损害，抑郁和焦虑水平升高，这凸显了有效治疗IgAN及为护理伙伴提供支持的必要性。
