淋巴管肌瘤病患者肺移植问卷调查分析

Survey of lung transplantation in patients with lymphangioleiomyomatosis

目的了解国内淋巴管肌瘤病（1ymphangioleiomyomatosis，LAM）患者对肺移植的看法和相关信息，推动LAM患者肺移植工作的开展。方法制定肺移植问卷调查表，对LAM患者进行问卷调查。结果发放问卷73份，共收集到57份有效问卷。调查对象均未接受过肺移植治疗。91．2％对肺移植有一定了解。认为可以承受肺移植费用的仅有5例患者（8．8％），35．1％存在经济困难但勉强可以承受，50．9％不能承担肺移植治疗费用。如果病情需要，54．4％愿意行肺移植。即使病情需要也不愿意肺移植的原因包括：47．4％宁愿先试用其他方法；43．9％由于肺移植风险太大而不考虑；42．1％因为治疗费用困难无法进行。结论LAM患者普遍对肺移植有一定了解，约一半患者如病情需要愿意接受肺移植治疗，但经济因素和肺移植治疗相关风险是重要的限制因素。

Objective To promote to carry out the work of lung transplantation in the patients with lyraphangioleiomyomatosis （LAM） through investigating the opinions and related information of the patients with LAM on lung transplantation in China. Methods The patients diagnosed as LAM were inquired by questionnaire about lung transplantation. Results 57 questionnaires of 73 were valid. The inquired patients did not received lung transplantation. 91.2% patients had a certain understanding of lung transplantation. Only five patients （8.8%） believed that they could afford the cost of lung transplantation, 35.1% had economic difficulties, but could possibly afford, and 50.9 % could not afford the cost. If lung transplantation was indicated, 54.4% of participants could accept lung transplantation. The causes of unwilling to conduct lung transplantation even if they were indicated included that 47.4% would prefer to try other methods, 43.9 % considered it was too risky to have lung transplantation, 42.1 was limited to high medical expenditure. Conclusions LAM patients generally have a certain understanding of lung transplantation, about half of the patients are willing to accept lung transplantation if they are indicated, but high cost and risks associated with lung transplantation are important limiting factors.