在马来西亚背景下通过认知面试对ALSSQOL-SF进行评估
Wafa' Sabirin1, Saiful Adni Abd Latif2, Fazlina Ahmad3
1Division of Palliative Medicine, Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Neurodegenerative disease management
|September 11, 2025
概括
针对ALS的特定生活质量仪器简体形式 (ALSSQOL-SF) 对马来西亚的肌缩侧面硬化症 (ALS) 患者具有有限的实用性. 对心理社会和精神领域的文化解释需要进一步调查,以准确评估生活质量.
科学领域:
- 医学研究 医学研究
- 生活质量研究 生命质量研究
- 卫生工具的跨文化适应.
背景情况:
- 生活质量 (QOL) 是对患者和护理人员的肌缩性侧面硬化症 (ALS) 护理的一个关键目标.
- 简单形式的ALS特定生活质量工具 (ALSSQOL-SF) 是一个已验证的工具,但其在马来西亚的使用尚未评估.
研究的目的:
- 评估ALSSQOL-SF在马来西亚环境中的实用性.
- 确定影响ALSSQOL-SF在马来西亚ALS患者中的应用的文化和语言因素.
主要方法:
- 使用ALSSQOL-SF (英语或马来语) 的21名ALS患者的生活质量评估.
- 利用认知采访和对患者反应的主题分析.
- 探索文化和语言对仪器解释的影响.
主要成果:
- 确定文化和语言是影响ALSSQOL-SF应用的重要因素.
- 与ALSSQOL-SF领域相比,发现了对亲密和宗教信仰的解释的变化.
- 而ALSSQOL-SF更好地捕获了物理领域的项目,而不是心理社会和精神方面的项目.
结论:
- 根据ALSSQOL-SF,评估马来西亚ALS患者的QOL存在局限性.
- 患者很难理解心理社会和精神方面的内容,即使在马来语翻译中.
- 需要对马来西亚宗教,亲密关系和精神福祉的文化相关表达进行进一步的研究.
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