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淋巴管平滑肌瘤病患者对气胸管理的看法。

Patient perspectives on management of pneumothorax in lymphangioleiomyomatosis.

作者信息

Young Lisa R, Almoosa Khalid F, Pollock-Barziv Stacey, Coutinho Meg, McCormack Francis X, Sahn Steven A

机构信息

Department of Medicine, University of Cincinnati, Division of Pulmonary and Critical Care, Cincinnati, OH 45267-0564, USA.

出版信息

Chest. 2006 May;129(5):1267-73. doi: 10.1378/chest.129.5.1267.

DOI:10.1378/chest.129.5.1267
PMID:16685018
Abstract

STUDY OBJECTIVES

The American College of Chest Physicians Delphi Consensus Statement on management of spontaneous pneumothorax recommended pleurodesis after the first secondary spontaneous pneumothorax to prevent recurrence, and evaluation of patients' perspectives regarding pneumothorax treatment was identified as a future research priority. Patients with lymphangioleiomyomatosis (LAM) are an ideal population for performing these studies, since pneumothorax occurs and recurs more commonly in LAM than in any other chronic pulmonary disorder.

STUDY DESIGN AND PARTICIPANTS

A 23-item questionnaire evaluating opinions of pneumothorax treatment was distributed to 615 patients in the LAM Foundation patient database, with a response rate of 52%.

RESULTS

Of respondents, 69% (216 of 314 patients) reported a history of radiographically documented pneumothorax, and 181 patients (84%) reported at least one pleurodesis procedure. Neither a history of pneumothorax nor surgical management of pneumothorax affected reported oxygen use or perception of overall lung function, yet 41% thought that their pneumothorax had contributed to a decline in lung function. Few patients (12%) worried frequently about a pneumothorax developing, but one third made lifestyle modifications due to fear of pneumothorax. Extensive pain associated with chest tube placement and inadequate pain management throughout treatment for pneumothorax were frequent concerns. Only 25% of respondents thought that pleurodesis was appropriate for a first pneumothorax, while 60% favored pleurodesis for a second pneumothorax. Despite the apparent reluctance to undergo pleurodesis, most patients agreed that pleurodesis helps prevent pneumothorax recurrence. One third of patients believed that their physicians did not consider their preferences regarding pneumothorax management.

CONCLUSIONS

LAM patients and physicians may have different views about the significance of pneumothorax, in that most patients appear to favor a conservative initial approach to pneumothorax management. In conjunction with appropriate pain management, a better understanding of patients' perspectives will facilitate cooperative decision making and may ultimately improve clinical outcomes in LAM related to pneumothorax.

摘要

研究目的

美国胸科医师学会关于自发性气胸管理的德尔菲共识声明建议在首次继发性自发性气胸后进行胸膜固定术以预防复发,并且评估患者对气胸治疗的看法被确定为未来的研究重点。淋巴管平滑肌瘤病(LAM)患者是进行这些研究的理想人群,因为与任何其他慢性肺部疾病相比,气胸在LAM中更常发生和复发。

研究设计与参与者

一份评估气胸治疗意见的包含23个条目的问卷被分发给LAM基金会患者数据库中的615名患者,回复率为52%。

结果

在受访者中,69%(314名患者中的216名)报告有影像学记录的气胸病史,181名患者(84%)报告至少接受过一次胸膜固定术。气胸病史和气胸的手术治疗均未影响报告的氧气使用情况或对整体肺功能的感知,但41%的患者认为他们的气胸导致了肺功能下降。很少有患者(12%)经常担心气胸发作,但三分之一的患者因害怕气胸而改变生活方式。与胸腔置管相关的剧烈疼痛以及气胸治疗全过程中疼痛管理不足是常见的担忧。只有25%的受访者认为胸膜固定术适用于首次气胸,而60%的受访者赞成在第二次气胸时进行胸膜固定术。尽管明显不愿接受胸膜固定术,但大多数患者同意胸膜固定术有助于预防气胸复发。三分之一的患者认为他们的医生没有考虑他们对气胸管理的偏好。

结论

LAM患者和医生对气胸的重要性可能有不同看法,因为大多数患者似乎倾向于对气胸管理采取保守的初始方法。结合适当的疼痛管理,更好地了解患者的观点将有助于合作决策,并最终可能改善与LAM相关的气胸的临床结局。

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