患有淋巴血管菌病的患者的疾病认知,疾病感知和相关因素
Liting Huang1,2,3,4, Lulu Yang1,2,3,4, Ruoyun Ouyang5,6,7,8
1Department of Pulmonary and Critical Care Medicine, the Second Xiangya Hospital, Central South University, Changsha, 410011, Hunan, China.
Orphanet journal of rare diseases
|February 19, 2025
概括
淋巴结膜炎 (LAM) 患者报告高度无助和负面的疾病感知,受疾病持续时间和活动限制的影响. 医疗保健提供者应该为这些患者提供更多的信息和心理支持.
科学领域:
- 肺部医学 肺部医学
- 罕见疾病 罕见疾病
- 患者报告的结果
背景情况:
- 淋巴细胞结核病 (Lymphangioleiomyomatosis,简称LAM) 是一种罕见的,进展性肺部疾病,主要影响女性.
- 了解患者的认知和感知对于管理LAM等慢性疾病至关重要.
研究的目的:
- 研究LAM患者的疾病认知和感知.
- 识别与这些感知相关的因素.
主要方法:
- 对121名LAM患者进行了基于网络的问卷调查.
- 收集的数据包括人口统计,疾病认知和疾病感知.
主要成果:
- LAM患者表现出更高的负面疾病认知能力,特别是无助感,以及更低的感知效益.
- 疾病持续时间,活动限制和手术史显著影响了认知和感知.
- 诸如拉巴素使用和氧气治疗等因素与疾病感知相关.
结论:
- LAM患者面临着重大的心理挑战,包括无助感和负面的疾病感知.
- 临床干预应解决信息和心理支持需求.
- 较长的疾病持续时间和活动限制加剧了消极的看法.
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