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帕金森病患者的生活质量:一个性别视角。

Quality of life in Parkinson's disease: A gender-specific perspective.

机构信息

Movement Disorders Unit, Tel-Aviv Sourasky Medical Center, Tel-Aviv, Israel.

Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel.

出版信息

Acta Neurol Scand. 2019 Jul;140(1):17-22. doi: 10.1111/ane.13095. Epub 2019 Apr 23.

Abstract

OBJECTIVES

The epidemiology, manifestations, and course of Parkinson's disease (PD) may differ in men and women. Assessments of severity of the illness and quality of life (QoL), and the burden on their caregivers (CG) may change as the disease advances. We determined gender differences in assessment by patients with PD themselves and by their CGs.

METHODS

Married couples in whom one of the partners was a PD patient and his/her spouse served as CG were separately evaluated. The patient completed the PD QoL Questionnaire (PDQ-39), and the spouse completed the Multidimensional Caregiver Strain Index (MCSI). Comparisons were performed using statistical tests.

RESULTS

We studied 122 patient-CG pairs consisting of 86 (70.5%) male patients. Female patients reported reduced QoL due to depression and pain. Worsening of QoL in advanced PD was reported only by male patients. Female CGs felt exhaustion and damage to their health resulting from care twice as often as male CG. Social constraint and time limitations were more frequent in female CGs, whereas in male CGs it remained the same. With increasing disease severity female CGs reported that manipulations and excessive demands from their male spouses increased, while male CGs reported the same level in female patients. Male CGs, unexpectedly considered themselves more free as PD advanced in their spouses.

CONCLUSIONS

Male and female PD patients and CGs assess differently the severity and burden of the disease. Clinicians and social workers should be aware of these factors in attempting to improve QoL of PD patients and CGs.

摘要

目的

帕金森病(PD)的流行病学、表现和病程在男性和女性中可能有所不同。随着疾病的进展,对疾病严重程度和生活质量(QoL)的评估以及对其照顾者(CG)的负担可能会发生变化。我们确定了 PD 患者自身和他们的 CG 对疾病严重程度评估的性别差异。

方法

分别评估了一对夫妇,其中一方是 PD 患者,另一方是他/她的配偶作为 CG。患者完成了帕金森病生活质量问卷(PDQ-39),配偶完成了多维照顾者压力指数(MCSI)。使用统计检验进行比较。

结果

我们研究了 122 对患者-CG 对,其中包括 86 名(70.5%)男性患者。女性患者因抑郁和疼痛而报告 QoL 降低。只有男性患者报告晚期 PD 中 QoL 恶化。女性 CG 感到疲惫和健康受损的频率是男性 CG 的两倍,原因是照顾。女性 CG 感到社会约束和时间限制的频率更高,而男性 CG 则保持不变。随着疾病严重程度的增加,女性 CG 报告说男性配偶的操纵和过度要求增加,而男性 CG 报告说女性患者的要求相同。出乎意料的是,男性 CG 认为随着配偶 PD 的进展,他们更加自由。

结论

男性和女性 PD 患者和 CG 对疾病的严重程度和负担的评估不同。临床医生和社会工作者应意识到这些因素,以努力提高 PD 患者和 CG 的生活质量。

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