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首页> 外文期刊>Journal of child neurology >The Burden of Subependymal Giant Cell Astrocytomas Associated With Tuberous Sclerosis Complex: Results of a Patient and Caregiver Survey
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The Burden of Subependymal Giant Cell Astrocytomas Associated With Tuberous Sclerosis Complex: Results of a Patient and Caregiver Survey

机译：结节性硬化症相关的室管膜下巨细胞星形细胞瘤的负担：病人和护理人员调查的结果

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摘要

Tuberous sclerosis complex is a genetic disorder characterized by benign tumor growth including lesions in the ventricular system of the brain known as subependymal giant cell astrocytomas. This analysis focuses on the clinical presentation, management, and associated burden of subependymal giant cell astrocytomas in patients with tuberous sclerosis complex in the United States. An institutional review board-approved web-based survey of tuberous sclerosis complex patients and caregivers collected information, and descriptive analyses were conducted on age-based subgroups. A total of 116 tuberous sclerosis complex-subependymal giant cell astrocytoma patients or caregivers responded (17% of the total tuberous sclerosis complex sample). Mean and median patient ages were 25.5 and 23.5 years. Besides subependymal giant cell astrocytomas, patients also experienced skin lesions (72%), seizures (65%), and cognitive concerns (60%). Forty-five percent reported having brain surgery (22% for subependymal giant cell astrocytoma). In the past year, 42% of patients were admitted at least once to the hospital whereas 39% went to the emergency department. Results demonstrate that tuberous sclerosis complex-subependymal giant cell astrocytoma is associated with significant clinical burden, resource utilization, and decreased well-being.
机译：结节性硬化症是一种遗传性疾病，其特征是良性肿瘤生长，包括脑室系统的病变，称为表皮下巨细胞星形细胞瘤。这项分析的重点是美国结节性硬化症患者的临床表现，治疗及室管膜下巨细胞星形细胞瘤的相关负担。机构审查委员会批准的基于网络的结节性硬化症患者和护理人员的网络调查收集了信息，并对基于年龄的亚组进行了描述性分析。总共116例结节性硬化复合物-胸膜巨细胞星形细胞瘤患者或护理人员有反应（占总结节性硬化复合物样本的17％）。患者的平均年龄和中位数年龄分别为25.5和23.5岁。除了室管膜下巨细胞星形细胞瘤，患者还经历了皮肤病变（72％），癫痫发作（65％）和认知障碍（60％）。百分之四十五表示进行脑部手术（表皮下室巨细胞星形细胞瘤占百分之二十二）。在过去的一年中，有42％的患者至少入院一次，而39％的患者去了急诊科。结果表明，结节性硬化症复杂的鳞茎状巨细胞星形细胞瘤与显着的临床负担，资源利用和幸福感降低相关。

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