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耻辱感是帕金森病患者健康相关生活质量的关键决定因素。

Stigma as a key determinant of health-related quality of life in Parkinson's disease.

作者信息

Ma Hui-Ing, Saint-Hilaire Marie, Thomas Cathi A, Tickle-Degnen Linda

机构信息

Department of Occupational Therapy, College of Medicine, National Cheng Kung University, 1 University Road, Tainan, 701, Taiwan.

Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

出版信息

Qual Life Res. 2016 Dec;25(12):3037-3045. doi: 10.1007/s11136-016-1329-z. Epub 2016 Jun 3.

Abstract

PURPOSE

People with Parkinson's disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics.

METHODS

This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson's Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M  = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living.

RESULTS

Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001).

CONCLUSIONS

Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.

摘要

目的

帕金森病(PD)患者可能因其明显的运动和沟通困难特征而遭受污名化。本文旨在在控制个人和临床特征后,研究经历的污名在健康相关生活质量(QOL)中的作用。

方法

这是对帕金森病社会自我管理研究(SocM-PD)基线数据子集的初步分析,SocM-PD是一项正在进行的为期3年的前瞻性队列研究。73名PD患者(M = 65.72,29名女性)参与了本研究。在控制性别、疾病严重程度、抑郁和日常生活运动困难后,采用分层多元回归分析来确定污名在生活质量中的作用。

结果

生活质量与性别(r = 0.26)、疾病严重程度(r = 0.38)、抑郁(r = 0.65)、日常生活运动困难(r = 0.71)和污名(r = 0.83)之间存在显著相关性。在控制了显著的协变量后,污名对生活质量的解释做出了显著且独特的贡献,贡献率为13.7%(p < 0.001)。最后进行的包含污名和4个协变量的分层多元回归显示,一个总体模型解释了生活质量总方差的77.8%(F [5, 63] = 48.79,p < 0.001)。

结论

经历的污名似乎是PD患者生活质量的关键决定因素。结果表明进一步了解PD中的污名对于制定可能的干预策略很重要。未来还需要用SocM-PD更大的纵向数据集来验证这些结果。

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