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亨廷顿舞蹈病中的淡漠评分:患者与陪伴者观点一致。

Rating Apathy in Huntington’s Disease: Patients and Companions Agree.

作者信息

Mason Sarah, Barker Roger A

机构信息

John Van Geest Centre for Brain Repair, University of Cambridge, Cambridge, UK.

出版信息

J Huntingtons Dis. 2015;4(1):49-59.

Abstract

BACKGROUND

Apathy is a common feature of Huntington’s disease (HD), even from early disease. However, patients are believed to lack insight into their own apathy and therefore clinicians and/or companions are relied upon to estimate the extent of a patient’s apathy. In addition, the evolution of apathy over time in HD has not been unequivocally established. OBJECTIVEs: The purpose of this study was to determine whether HD patient’s self-rated apathy scores were consistent with the scores given by companions who were also asked to rate the patients apathy. Furthermore, the clinical correlates of apathy and its stability over time were examined for both self-rated and companion-rated scores. METHODs: Apathy was measured in a large cross-sectional population of HD patients ranging from early to late stage disease (n = 106) using the Apathy Evaluation Scale; a subgroup of whom were followed longitudinally (n = 62) on average 18.7 (1.2 SD) months later. Comparisons were made between self-rated and companion-rated apathy and the relationship between apathy and motor, cognitive and functional performance was explored.

RESULTS

Analysis of the cross-sectional data revealed that self-rated and companion-rated apathy were highly correlated, establishing the validity of using self-rated instead of, or in combination with, companion-rated assessments of apathy in future studies. Both self-rated and companion-rated scores had a relationship with motor and functional impairment, but had a complex relationship with cognition. The results of the longitudinal comparison revealed that apathy did not change over time in this cohort.CONCLUSIONs: Apathy can be equally well assessed by either patients or companions and does not change significantly over an18 month period. These findings have implications in the design of studies looking at treating this important aspect of HD.

摘要

背景

冷漠是亨廷顿舞蹈症(HD)的常见特征,即使在疾病早期也是如此。然而,患者被认为对自身的冷漠缺乏洞察力,因此临床医生和/或陪伴者需依靠他们来评估患者冷漠的程度。此外,HD患者冷漠情绪随时间的演变尚未得到明确证实。

目的

本研究旨在确定HD患者的自评冷漠得分是否与陪伴者给出的得分一致,陪伴者也被要求对患者的冷漠程度进行评分。此外,还研究了自评和陪伴者评分中冷漠的临床相关性及其随时间的稳定性。

方法

使用冷漠评估量表对一大组从疾病早期到晚期的HD患者(n = 106)进行横断面研究,测量其冷漠程度;其中一个亚组在平均18.7(1.2标准差)个月后进行纵向随访(n = 62)。比较了自评和陪伴者评分的冷漠程度,并探讨了冷漠与运动、认知和功能表现之间的关系。

结果

横断面数据分析显示,自评和陪伴者评分的冷漠程度高度相关,这为未来研究中使用自评而非陪伴者评分或两者结合评估冷漠的有效性奠定了基础。自评和陪伴者评分均与运动和功能损害有关,但与认知的关系较为复杂。纵向比较结果显示,该队列中的冷漠程度随时间未发生变化。

结论

患者或陪伴者对冷漠的评估效果相当,且在18个月内无显著变化。这些发现对研究HD这一重要方面的治疗设计具有启示意义。

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