A comparison of long-term ventilatory support alternatives from the perspective of the patient and care giver.

Tracheostomy, noninvasive intermittent positive pressure ventilation (IPPV) methods, and body ventilators can be used for ventilatory support. These methods vary with respect to safety, convenience, effect on speech, sleep, swallowing, appearance, comfort, and general patient acceptability. The purpose of this study was to determine patient and care giver ventilatory support preferences concerning these quality of life issues. One hundred sixty-eight predominantly neuromuscular patients with greater than 1 month of experience in the use of both tracheostomy and noninvasive methods were surveyed. At the time of the study they had a mean age of 54.7 +/- 11.4 years, were using ventilatory aids a mean of 17.1 +/- 6.5 h/d, and had been doing so for 22.7 +/- 13.1 consecutive years. The 59 respondents who switched from tracheostomy to noninvasive aids significantly preferred the latter for every item and unanimously preferred them over all. The 76 respondents switched from body ventilator use to tracheostomy IPPV significantly preferred use of the former for appearance and speech and the latter for sleep and security and had no other significant preferences. However, the 35 respondents switched from a regimen of noninvasive aids including noninvasive IPPV to tracheostomy IPPV significantly preferred the noninvasive aids for each item except for sleep, swallowing, and security for which there were no significant preferences. We conclude that whether patients switched to or from noninvasive ventilatory support regimens which include noninvasive IPPV, noninvasive methods are considered by patients to be more convenient, to have less untoward effects on speech, appearance and comfort, and are preferred overall to tracheostomy IPPV.