在肌缩侧面硬化症/运动神经元疾病中,污名的决定因素和进展
Carolyn A Young1,2, Amina Chaouch3, Christopher J Mcdermott4
1Walton Centre NHS Foundation Trust, Liverpool, UK.
Amyotrophic lateral sclerosis & frontotemporal degeneration
|January 3, 2025
概括
耻辱感在肌缩性侧面硬化/运动神经元疾病 (ALS/MND) 中很常见,影响超过80%的患者. 焦虑和疲劳等因素增加了耻辱感,随着时间的推移,这种耻辱感往往会恶化,影响生活质量.
科学领域:
- 神经学 神经学
- 心理学 心理学 心理学
- 社会学 社会学 社会学
背景情况:
- 肌缩性侧面硬化/运动神经元疾病 (ALS/MND) 中的耻辱感会对生活质量和社会参与产生负面影响.
- 了解污名的流行和影响因素对于制定有针对性的干预措施至关重要.
研究的目的:
- 确定ALS/MND.MND患者中感觉和实行的耻辱的流行程度.
- 识别与耻辱相关的人口,临床和心理因素.
- 分析随着时间的推移在ALS/MND群体中的耻辱的轨迹.
主要方法:
- 从神经条件-ALS研究中结果轨迹的数据的横截面和纵向分析.
- 纳入了1059名参与者,他们使用了经过验证的衡量标准来衡量耻辱感,疲劳,性,功能,情绪,担忧,自尊和感知健康.
- 回归,结构方程建模和轨迹模型用于分析超过30个月的数据.
主要成果:
- 83.5%的参与者报告了耻辱感.
- 增加耻辱的因素包括担忧,晚期疾病严重程度 (国王阶段≥3),情绪不稳定,疲劳,性和腹筋发作.
- 增加年龄,与伴侣生活,以及更高的自尊心与减少耻辱感有关.
结论:
- 在ALS/MND中,感觉和实践的耻辱都很普遍.
- 年轻的个体,那些有气泡发作,情绪不稳定,焦虑,疲劳,性或疾病晚期的人面临更高的风险.
- 耻辱感通常在早期出现,并在疾病过程中显著增加.
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