Monin Joan K, Gutierrez Jesús, Kellner Sarah, Morgan Sarah, Collins Kathleen, Rohl Brittany, Migliore Fanny, Cosentino Stephanie, Huey Edward, Louis Elan D
Department of Social and Behavioral Sciences, Yale School of Public Health, Yale University, New Haven, CT, USA.
Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, Yale University, New Haven, CT, USA.
Tremor Other Hyperkinet Mov (N Y). 2017 Dec 18;7:526. doi: 10.7916/D8Q53WF0. eCollection 2017.
Although the motor and non-motor features of essential tremor (ET) have been characterized in detail, it is not known whether ET patients suffer psychologically and whether those who are close to them consider them to be suffering in this way.
Fifty ET patients and 50 "close others" (COs), identified by patients "as someone who knows you well and sees you often" and who can "provide a different perspective on your well-being", reported their own depressive symptoms, daily stress, and perceptions of patient psychological suffering and patient overall suffering with validated scales. ET patients' tremor severity, duration, disability, cognition, and number of medications were also assessed.
ET patients reported levels of psychological suffering within the range documented in arthritis and dementia patients from previous studies, and COs perceived significantly more psychological suffering in patients than patients reported themselves. Regression models, controlling for tremor severity, duration, and disability revealed that patients' greater psychological suffering was associated with greater patient depression. The greater perceptions of COs of patient psychological and overall suffering were associated with greater CO depression and daily stress. Sensitivity analysis showed that patients' cognitive status or number of medications did not affect the results.
Multidisciplinary teams caring for ET patients should look beyond simple clinical ET indicators. They should be aware of patient experiences and perceptions of COs of psychological and overall suffering. This will help guide the development of evidence-based, supportive interventions that improve communication about the needs of ET patients and those who are close to them.
尽管特发性震颤（ET）的运动和非运动特征已得到详细描述，但尚不清楚ET患者是否存在心理痛苦，以及其身边亲近之人是否认为他们有这种痛苦。
50名ET患者和50名“亲近他人”（COs），后者由患者指认“是很了解你且经常见到你的人”，且能“对你的健康状况提供不同视角”，他们使用经过验证的量表报告自己的抑郁症状（患者组）、日常压力以及对患者心理痛苦和总体痛苦的看法（患者组和COs组）。还评估了ET患者的震颤严重程度、病程、残疾情况、认知功能及用药数量。
ET患者报告的心理痛苦水平处于先前研究中关节炎和痴呆患者记录的范围内，且COs认为患者的心理痛苦明显多于患者自我报告的程度。在控制震颤严重程度、病程和残疾情况的回归模型中显示，患者更大的心理痛苦与更严重的抑郁相关。COs对患者心理和总体痛苦的更高认知与COs更严重的抑郁和日常压力相关。敏感性分析表明，患者的认知状态或用药数量不影响结果。
护理ET患者的多学科团队应超越简单的临床ET指标。他们应了解患者的经历以及COs对心理和总体痛苦的认知。这将有助于指导制定基于证据的支持性干预措施，改善关于ET患者及其亲近之人需求的沟通。
