Cutler D, Murphy T, Gilmour J, Heyman I
Islington Community CAMH, Northern Health Centre, 3rd Floor, 580 Holloway Road, London N7 6LB, UK.
Child Care Health Dev. 2009 Jul;35(4):496-504. doi: 10.1111/j.1365-2214.2009.00983.x.
The study examined a UK sample of 57 young people with Tourette syndrome (TS).
The purpose of this study was to consider the impact of TS on young people's Quality of Life (QoL).
The study used a mixed methods design, combining focus groups and questionnaire data. Child report questionnaires measured QoL and TS symptom severity.
The results showed that the QoL of children with TS was significantly worse than that of children in a UK normative sample. Analysis of transcripts from the groups identified four main themes; 'TS can be distressing and disabling', 'struggling to fit into society's expectations of normal behaviour', 'needing to control tics' and 'TS is one part of who I am'.
Poorer QoL was associated with increased symptom severity in terms of tics, Attention Deficit Hyperactivity Disorder diagnosis and obsessive compulsive behaviours.
该研究对英国57名患有妥瑞氏症（TS）的年轻人样本进行了调查。
本研究的目的是探讨妥瑞氏症对年轻人生活质量（QoL）的影响。
该研究采用混合方法设计，结合了焦点小组和问卷调查数据。儿童报告问卷测量了生活质量和妥瑞氏症症状严重程度。
结果表明，患有妥瑞氏症的儿童的生活质量明显低于英国正常样本中的儿童。对小组记录的分析确定了四个主要主题：“妥瑞氏症可能令人痛苦且致残”、“努力符合社会对正常行为的期望”、“需要控制抽搐”以及“妥瑞氏症是我的一部分”。
在抽搐、注意力缺陷多动障碍诊断和强迫行为方面，较差的生活质量与症状严重程度增加有关。
