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脊髓性肌萎缩症患儿父母的生活质量、照顾者负担以及抑郁和焦虑症状:与健康对照组的比较

Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls.

作者信息

Koyuncu Zehra, Sönmez Kurukaya Seda, Uluğ Fitnat, Dilek Tuğçe Damla, Zindar Yılmaz, Arslan Büşra, Tayşi Berkay, Anaç Elif, Balkanas Mustafa, Kesik Sena, Sak Kevser, Demirel Ömer Faruk, Doğangün Burak, Saltık Sema

机构信息

Department of Child and Adolescent Psychiatry, Cerrahpasa Faculty of Medicine, Istanbul University-Cerrahpasa, 3409 Istanbul, Turkey.

Department of Pediatric Neurology, Cerrahpasa Faculty of Medicine, Istanbul University-Cerrahpasa, 3409 Istanbul, Turkey.

出版信息

Medicina (Kaunas). 2025 May 21;61(5):930. doi: 10.3390/medicina61050930.

Abstract

: Spinal muscular atrophy (SMA) is a disease that leads to muscle weakness and significantly affects the lives of both patients and caregivers. This study aims to compare quality of life, caregiver burden, symptoms of depression and anxiety, life satisfaction, and mental well-being between parents of children with SMA and those of healthy children. : This cross-sectional study included parents of children under 18 years old, both healthy and diagnosed with SMA. The participants completed the WHOQOL-BREF, Zarit Caregiver Burden Scale (ZCBS), Hospital Anxiety and Depression Scale (HADS), Satisfaction with Life Scale (SWLS), and the Flourishing Scale (FS). In addition, the relationships among these measures were analyzed. : Our study showed that the parents of children with SMA had significantly higher scores across all subscales of the WHOQOL-BREF ( = 0.004, = 0.009, = 0.007, < 0.001) and the HADS depression subscale ( = 0.005). However, no significant differences were found between the groups in terms of the ZCBS, the HADS anxiety subscale ( = 0.802), SWLS ( = 0.251), or FS ( = 0.929) scores. Additionally, the ZCBS and HADS anxiety scores were significantly higher among parents of children with SMA type 1 compared to those with type 3 ( = 0.010 and = 0.037, respectively). Lastly, a moderate positive correlation was found between the ZCBS and the HADS anxiety subscales (r = 0.632, < 0.001). : This study highlights the decline in quality of life and increased depression symptoms among parents of children with SMA, suggesting the need for psychiatric evaluation and additional support for those caregivers.

摘要

脊髓性肌萎缩症(SMA)是一种导致肌肉无力的疾病,严重影响患者及其照料者的生活。本研究旨在比较SMA患儿父母与健康儿童父母在生活质量、照料者负担、抑郁和焦虑症状、生活满意度及心理健康方面的差异。:这项横断面研究纳入了18岁以下儿童的父母,这些儿童既有健康的,也有被诊断为SMA的。参与者完成了世界卫生组织生活质量简表(WHOQOL - BREF)、扎里特照料者负担量表(ZCBS)、医院焦虑抑郁量表(HADS)、生活满意度量表(SWLS)和蓬勃发展量表(FS)。此外,还分析了这些量表之间的关系。:我们的研究表明,SMA患儿的父母在WHOQOL - BREF的所有子量表上得分显著更高(= 0.004,= 0.009,= 0.007,< 0.001)以及HADS抑郁子量表得分(= 0.005)。然而,两组在ZCBS、HADS焦虑子量表(= 0.802)、SWLS(= 0.251)或FS(= 0.929)得分方面未发现显著差异。此外,与3型SMA患儿的父母相比,1型SMA患儿的父母的ZCBS和HADS焦虑得分显著更高(分别为= 0.010和= 0.037)。最后,发现ZCBS与HADS焦虑子量表之间存在中度正相关(r = 0.632,< 0.001)。:本研究强调了SMA患儿父母生活质量的下降和抑郁症状的增加,表明需要对这些照料者进行精神评估并提供额外支持。

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