Survey of lung transplantation in patients with lymphangioleiomyomatosis

Objective To promote to carry out the work of lung transplantation in the patients with lymphangioleiomyomatosis (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. Key words: Lymphangionleiomyomatosis; Lung transplantation; Survey