Page Donna, Butler Anthony, Jahanshahi Marjan
Cognitive-Motor Neuroscience Group, Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, University College London, The National Hospital for Neurology & Neurosurgery, London, United Kingdom.
Mov Disord. 2007 Feb 15;22(3):341-7. doi: 10.1002/mds.21234.
The objective of this study was to assess quality of life (QoL) in a community-based sample of people with various forms of dystonia and to identify the factors that predict QoL in dystonia. QoL was assessed using two generic questionnaires: the Medical Outcomes Study Short-Form 36 (SF36) and the EuroQol questionnaire. A host of demographic, clinical, and psychosocial variables were measured to identify the best predictors of QoL in dystonia. A comparison of EuroQol and SF36 scores with the norms for the general UK population of similar age showed that people with dystonia had scores indicative of worse QoL on all domains, particularly those related to physical and social functioning. The impairment of QoL was seen in all age groups and was similar for men and women. Compared to the focal dystonia group, participants with generalized dystonia scored significantly worse on all QoL measures. Participants who were unemployed also scored significantly worse. There was also a trend for younger and separated/divorced participants to score worse on QoL measures. A stepwise regression analysis revealed that functional disability, body concept, and depression were important predictors of QoL in dystonia. Dystonia influences various aspects of QoL, particularly those related to physical and social functioning. The impairment of QoL was greater for participants with generalized dystonia, those who were unemployed, younger, and separated/divorced. Functional disability, body concept, and depression were the best predictors of QoL in dystonia. Efforts to improve health care for people with dystonia should not only focus on management of the movement disorder but also consider modifying functional disability and negative body concept and depression that contribute to poor QoL in this disorder.
本研究的目的是评估社区中各类肌张力障碍患者的生活质量（QoL），并确定预测肌张力障碍患者生活质量的因素。使用两份通用问卷评估生活质量：医学结局研究简表36（SF36）和欧洲生活质量调查问卷（EuroQol）。测量了一系列人口统计学、临床和心理社会变量，以确定肌张力障碍患者生活质量的最佳预测因素。将EuroQol和SF36评分与英国相似年龄普通人群的标准进行比较，结果显示肌张力障碍患者在所有领域的评分都表明其生活质量较差，尤其是与身体和社会功能相关的领域。各年龄组均出现生活质量受损情况，且男女情况相似。与局限性肌张力障碍组相比，全身性肌张力障碍患者在所有生活质量指标上的得分明显更低。失业参与者的得分也明显更低。年轻以及分居/离婚的参与者在生活质量指标上得分较低也有一定趋势。逐步回归分析表明，功能残疾、身体观念和抑郁是肌张力障碍患者生活质量的重要预测因素。肌张力障碍会影响生活质量的各个方面，尤其是与身体和社会功能相关的方面。全身性肌张力障碍患者、失业者、年轻人以及分居/离婚者的生活质量受损情况更严重。功能残疾、身体观念和抑郁是肌张力障碍患者生活质量的最佳预测因素。改善肌张力障碍患者医疗保健的努力不仅应侧重于运动障碍的管理，还应考虑改善导致该疾病患者生活质量低下的功能残疾、负面身体观念和抑郁状况。
