囊性纤维化患者的嗅觉丧失:社区的看法和影响
Jessa E Miller1, Christine M Liu2, Edith T Zemanick3
1University of California, Los Angeles, Department of Otolaryngology-Head and Neck Surgery, Los Angeles, CA, USA.
概括
嗅觉功能障碍在囊性纤维化患者中很常见,影响他们的生活质量. 肺结核社区表现出强烈的意愿参与嗅觉功能障碍研究.
科学领域:
- 肺部医学 肺部医学
- 生活质量研究 研究 生命质量研究
- 感官科学 感官科学
背景情况:
- 嗅觉功能障碍 (OD) 是一种常见的疾病,影响患有囊性纤维化 (PwCF) 的人.
- OD对PwCF的生活质量 (QOL) 有重大影响.
- 了解OD感知和QOL影响对于PwCF护理至关重要.
研究的目的:
- 评估PwCF对OD的看法.
- 调查OD对PwCF的QOL的影响.
- 评估CF社区参与OD研究的意愿.
主要方法:
- 在2023年,通过CF基金会的社区声音计划分发了一个21个问题的调查.
- 该调查包含了嗅觉障碍简要问卷 (BQOD) 来测量QOL.
- 问题涉及嗅觉体验和研究兴趣.
主要成果:
- 百分之九十一的受访者 (69/76) 报告了嗅觉问题.
- 平均BQOD得分为5.0,表明嗅觉QOL受损.
- 95% (72/76) 的人表示愿意参与OD研究.
结论:
- 嗅觉功能障碍和相关的质量生活障碍在PwCF中非常普遍.
- 资金基金社区对OD研究表现出了很大的兴趣和准备.
- 在PwCF中进一步研究OD是有必要的,并得到了社区的支持.
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