Smit Marenka, Bartels Anna L, Kuiper Anouk, Kamphuis Arwen S J, Han Vladimir, Tijssen Marina A J
Department of Neurology University Medical Center Groningen University of Groningen Groningen the Netherlands.
Department of Neurology Ommelander Hospital Group Delfzijl the Netherlands.
Mov Disord Clin Pract. 2017 Jun 15;4(5):750-754. doi: 10.1002/mdc3.12510. eCollection 2017 Sep-Oct.
Evidence suggests that non-motor symptoms (NMS) are the most important predictors of decreased health-related quality of life (HR-QoL) in patients with cervical dystonia (CD). In this study, we evaluate an NMS screening list and examine the influence of motor symptoms and NMS on HR-QoL.
In 40 patients with CD, the frequency of NMS was evaluated using an extended NMS questionnaire. Furthermore, patients composed a list of their 5 most burdensome motor symptoms and NMS and scored the severity of predefined symptoms. HR-QoL was examined with the RAND 36-item Health Survey.
Of 40 patients, 38 experienced NMS (median number of NMS, 6.5; range, 0-13; maximum, 15). The self-perceived most burdensome symptoms were tremor/jerks, pain, sleep disturbances, daily-life limitations, and fatigue. Also, of the predefined symptom list, tremor and fatigue were identified as the most disturbing. Several domains of HR-QoL were significantly influenced by NMS, whereas motor symptoms had only a small influence on the physical functioning domain of HR-QoL.
Our findings highlight the impact of NMS on HR-QoL and emphasize the importance of a standardized, validated NMS questionnaire for patients with dystonia. This would enable us to monitor the effect of treatment for motor symptoms and NMS on an individual basis and improve treatment options.
有证据表明,非运动症状(NMS)是颈部肌张力障碍(CD)患者健康相关生活质量(HR-QoL)下降的最重要预测因素。在本研究中,我们评估了一份NMS筛查清单,并研究了运动症状和NMS对HR-QoL的影响。
对40例CD患者,使用扩展的NMS问卷评估NMS的发生频率。此外,患者列出了他们最困扰的5种运动症状和NMS,并对预定义症状的严重程度进行评分。使用兰德36项健康调查评估HR-QoL。
40例患者中,38例出现NMS(NMS中位数为6.5;范围为0-13;最大值为15)。自我感觉最困扰的症状是震颤/抽搐、疼痛、睡眠障碍、日常生活受限和疲劳。此外,在预定义的症状清单中,震颤和疲劳被确定为最令人困扰的症状。HR-QoL的几个领域受到NMS的显著影响,而运动症状对HR-QoL的身体功能领域影响较小。
我们的研究结果突出了NMS对HR-QoL的影响,并强调了标准化、经过验证的NMS问卷对肌张力障碍患者的重要性。这将使我们能够在个体基础上监测运动症状和NMS的治疗效果,并改善治疗方案。