自我认知的局限性、污名和整体感对多发性硬化症患者生活质量的影响：一项横断面研究的结果。
The impact of self-perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients: results of a cross-sectional study.
机构信息
1 Department of Health Sciences, Community and Occupational Medicine, University Medical Center Groningen (UMCG), University of Groningen, Groningen, The Netherlands.
2 Wenckebach Institute, University Medical Center Groningen (UMCG), University of Groningen, Groningen, The Netherlands.
出版信息
Clin Rehabil. 2018 Apr;32(4):536-545. doi: 10.1177/0269215517730670. Epub 2017 Sep 12.
OBJECTIVE
To examine the impact of perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients.
DESIGN
Cross-sectional survey.
SETTING
Department of Neurology, University Medical Center Groningen, the Netherlands.
SUBJECTS
Multiple sclerosis patients.
MAIN MEASURES
World Health Organization Quality of Life - abbreviated version, Stigma Scale for Chronic Illness, Sense of Coherence Scale, background and disease-related questions.
RESULTS
In total, 185 patients (61% response rate) participated in the study with moderate to severe limitations. Stigma was highly prevalent but low in severity. Patients with a higher sense of coherence experienced a lower level of limitations ( B = -0.063, P < 0.01) and less stigma (enacted stigma B = -0.030, P < 0.01; self-stigma B = -0.037, P < 0.01). Patients with a higher level of limitations experienced more stigma (enacted stigma B = 0.044, P < 0.05; self-stigma B = 0.063, P < 0.01). Patients with a higher sense of coherence experienced better quality of life (physical health B = 0.059, P < 0.01; psychological health B = 0.062, P < 0.01; social relationships B = 0.052, P < 0.01; environmental aspects B = 0.030, P < 0.01). Patients with a higher level of limitations experienced poorer quality of life (physical health B = -0.364, P < 0.01; psychological health B = -0.089, P < 0.05) and patients with more stigma also experienced poorer quality of life (self-stigma: physical health B = -0.073, P < 0.01; psychological health B = -0.089, P < 0.01; social relationships B = -0.124, P < 0.01; environmental aspects B = -0.052, P < 0.01, and enacted stigma: physical health B = -0.085, P < 0.10).
CONCLUSION
Patients with less perceived limitations and stigma and a higher level of sense of coherence experienced better quality of life. Patients with a higher sense of coherence experienced a lower level of limitations and less stigma.
目的
探讨多发性硬化症患者感知限制、污名和心理一致感对生活质量的影响。
设计
横断面调查。
地点
荷兰格罗宁根大学医学中心神经科。
对象
多发性硬化症患者。
主要观察指标
世界卫生组织生活质量简表、慢性病污名量表、心理一致感量表、背景和疾病相关问题。
结果
共纳入 185 例患者（应答率 61%），其感知限制为中度至重度。污名高度普遍但严重程度较低。心理一致感水平较高的患者感知限制程度较低（ B = -0.063， P < 0.01），污名程度较低（体验性污名 B = -0.030， P < 0.01；自我污名 B = -0.037， P < 0.01）。感知限制程度较高的患者经历了更多的污名（体验性污名 B = 0.044， P < 0.05；自我污名 B = 0.063， P < 0.01）。心理一致感水平较高的患者生活质量更好（生理健康 B = 0.059， P < 0.01；心理健康 B = 0.062， P < 0.01；社会关系 B = 0.052， P < 0.01；环境方面 B = 0.030， P < 0.01）。感知限制程度较高的患者生活质量较差（生理健康 B = -0.364， P < 0.01；心理健康 B = -0.089， P < 0.05），污名程度较高的患者生活质量也较差（自我污名：生理健康 B = -0.073， P < 0.01；心理健康 B = -0.089， P < 0.01；社会关系 B = -0.124， P < 0.01；环境方面 B = -0.052， P < 0.01，体验性污名：生理健康 B = -0.085， P < 0.10）。
结论
感知限制和污名程度较低、心理一致感水平较高的患者生活质量较好。心理一致感水平较高的患者感知限制程度较低，污名程度较低。
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