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首页> 外文期刊>Journal of child neurology >Parental Understanding of Tuberous Sclerosis Complex
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Parental Understanding of Tuberous Sclerosis Complex

机译：父母对结节性硬化症的了解

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Tuberous sclerosis complex is a genetic disorder with multisystem involvement that poses significant challenges to the affected child and family. Caregiver knowledge in the South African population has not previously been reported. A prospective study of the parents of 21 children with tuberous sclerosis complex was undertaken. Median parental age was 38 (interquartile range 34.5-45) years. Parents were randomly allocated to receive written information about the condition, or to receive verbal counseling already established in clinic. A significant difference (P = .001) was observed in the change in the mean knowledge scores for the parent group that received written information (34.2 at baseline, 51.7 at the second visit. This impact was higher in parents with an education level of at least grade 8 (P = .003). Parental understanding of tuberous sclerosis complex can be improved by provision of written information and should be routinely available in a readily understandable format.
机译：结节性硬化症是一种遗传性疾病，涉及多个系统，对受影响的儿童和家庭构成了重大挑战。南非人口中的看护者知识以前尚未见报道。对21名结节性硬化症患儿的父母进行了一项前瞻性研究。父母的平均年龄为38岁（四分位间距34.5-45）。父母被随机分配以接收有关病情的书面信息，或接受诊所已经建立的口头咨询。接受书面信息的父母组的平均知识得分的变化存在显着差异（P = .001）（基线时为34.2，第二次访视时为51.7。这一影响在教育水平为至少8年级（P = .003）。父母可以通过提供书面信息来增强对结节性硬化症的了解，并且应该以易于理解的格式例行提供。

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