Tourette综合征儿童主观生活质量研究

目的：探讨Tourette综合征（TS）儿童的主观生活质量状况，为其综合干预提供理论依据。方法：选取儿童保健科就诊的174例TS患儿（≥8岁）作为病例组，选取儿童保健科门诊的正常体检儿童186例(≥8岁)为对照组。采用病例对照研究的方法探讨TS儿童的主观生活质量状况。结果：TS儿童主观生活质量总分（156.6±21.1）低于对照组（164.2±21.2）（P<0.01），家庭生活、学校生活、认知成分、抑郁体验和焦虑体验得分（19.1±3.5，24.1±4.4，90.6±13.3，24.0±4.6，23.8±4.4）亦低于对照组（20.7±3.0，26.6±3.2，97.9±15.3，25.1±3.1，24.7±3.5）（P<0.05）。相关分析发现TS儿童主观生活质量总分与患儿年龄、病程、症状严重程度、儿童行为总分及家庭矛盾性呈负相关 (r=-0.432，-0.213，-0.869，-0.137, -0.257；均P＜0.01)，而与家庭娱乐性呈正相关(r=0.084，P＜0.01)。多元逐步回归分析显示TS儿童主观生活质量的影响因素是症状严重程度、患儿年龄、家庭矛盾性和娱乐性(β′=-0.787，-0.171，-0.109，0.106；P<0.01)。结论：TS儿童主观生活质量不佳；为提高患儿主观生活质量，尽早控制临床症状与改善家庭环境是必要的。

Subjective quality of life in children with Tourette syndrome

Objective This study explored the subjective quality of life in children with Tourette syndrome(TS) in order to provide a basis for more effective interference of TS. Methods A total of 174 children with TS(≥8 years old) and 186 aged-matched healthy children as controls were enrolled.The subjective quality of life was investigated by a case-control study. Results The total score of subjective quality of life in the TS group(156.6±21.1) was lower than that in the control group(164.2±21.2;P<0.01).The scores of family life,school life,cognitive component,anxiety experience and depression experience(19.1±3.5 vs 20.7±3.0,24.1±4.4 vs 26.6±3.2,90.6±13.3 vs 97.9±15.3,24.0±4.6 vs 25.1±3.1 and 23.8±4.4 vs 24.7±3.5) in the TS group were lower than those in the control group(P<0.05).The correlation analysis showed that the total score of subjective quality of life in children with TS was negatively related to the age,the course of disease,the severity of symptoms,the total score of child behavior problem and family conflict(r=-0.432,-0.213,-0.869,-0.137,-0.257;P<0.01),while it was positively related to family active-cultural orientation(r=0.084,P<0.01).The multiple step regression analysis indicated that the factors influencing the subjective quality of life in children with TS included the severity of symptoms,age,family conflict and family active-cultural orientation(β′=-0.787,-0.171,-0.109,0.106;P<0.01). Conclusions The subjective quality of life is not well in children with TS.It is important to control clinical symptoms and improve family environment for the improvement of the subjective quality of life in children with TS.