Quality of Life of Patients with Stiff Person Syndrome

Chiemi Kobayashi, Y. Makihara, Y. Nishida
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Abstract

Aim: This study aimed to identify the factors that significantly affect the quality of life (QoL) of patients with Stiff-Person syndrome (SPS) by examining their physical, psychological, and social aspects using questionnaires. Methods: This cross-sectional study included 23 patients with SPS. Data were collected using several questionnaires. Patient QoL was quantified using the EuroQoL-5-Dimention 5-Level; sociodemographic characteristics and other relevant variables were examined. Results: QoL was poorer for patients with SPS than those with moderate to severe Alzheimer’s disease. Several important factors for patients’ QoL have been identified, including difficulty in breathing, pain, mobility issues leading to difficulty performing daily activities, depressive symptoms inherent to SPS, and insufficient social support. Conclusion: Factors that significantly influenced the QoL of patients with SPS were related to multiple aspects of their lives. We evaluated all previously used methods. A disease-specific evaluation form is required to assess these patients thoroughly.
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僵硬人综合征患者的生活质量
目的:本研究旨在通过问卷调查的方式对僵人综合征(SPS)患者的身体、心理和社会方面进行调查,以确定影响其生活质量(QoL)的因素。方法:对23例SPS患者进行横断面研究。数据是通过几份问卷收集的。采用euroqol -5- dimensional 5-Level对患者的生活质量进行量化;研究了社会人口特征和其他相关变量。结果:SPS患者的生活质量较中重度阿尔茨海默病患者差。已经确定了影响患者生活质量的几个重要因素,包括呼吸困难、疼痛、导致日常活动困难的行动问题、SPS固有的抑郁症状以及社会支持不足。结论:影响SPS患者生活质量的因素与患者生活的多个方面有关。我们评估了所有以前使用的方法。需要一份疾病特异性评估表来彻底评估这些患者。
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