Home mechanical ventilation: demographics and user perspectives.

Although the number of users of home mechanical ventilation (HMV) is increasing, information regarding the users' perceptions of the impact of HMV on their lives is incomplete. We administered an open-ended questionnaire to 98 (48 male, 50 female) HMV users aged (mean +/- SD) 47.4 +/- 19.5 years with COPD (9%), thoracic restrictive disease (43%), and neuromuscular disease (48%). At the time of survey, subjects had received HMV for 59.5 +/- 58.3 months. Fifty-three percent were ventilated electively. Ventilator use was continuous (18%), at night only (37%), or at night with occasional daytime use (45%). Twenty-seven (28%) individuals identified themselves as being totally independent while 32 (33%) rated themselves as partially dependent on caregiver assistance for daily activities. Only 37 (38%) considered that they had made an informed choice when first starting HMV whereas 54 (55%) did not. The impact of using a mechanical ventilator was believed to be overwhelmingly positive (87%). Positive comments regarding the impact of the ventilator on lifestyle were grouped in the following categories: life sustaining, facilitating mobility, and improving physical symptoms. Negative comments were grouped in the following categories: limiting mobility, equipment issues, and social implications. HMV users with a tracheostomy volunteered significantly fewer positive statements than those ventilated noninvasively (p < 0.05). Whereas 52 (53%) of users indicated that they had experienced initial difficulties in coping with the ventilator, only 11 (11%) identified difficulties at the time of the survey.