Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers

BACKGROUND: To maximize the likelihood of successful long-term mechanical ventilation (MV) in patients with neuromuscular diseases, ventilator characteristics and settings must be chosen carefully, taking into account both medical requisites and the patient's preference and comfort. OBJECTIVES: To evaluate patients' knowledge about and comfort with their long-term MV; to compare patients' and prescribers' opinions and expectations regarding long-term MV; and to compare the equipment used by the patients to the prescribers' current MV prescription. METHODS: Neuromuscular patients receiving long-term MV, and home MV prescribers in Belgium and France were asked to respond to a questionnaire survey specifically developed for the study. RESULTS: Completed questionnaires were collected from 209 patients (mean age 35.4 +/- 15.9 y, range 3-86 y), ventilated since 11 +/- 17 year, and 45 MV prescribers. One hundred sixty-three (78%) patients correctly designated their MV mode as a volume or pressure controlled mode. When an inspiratory trigger was available, 92% of the patients were able to use it, but only 69% were satisfied. Prescribers were more prone than patients to use new technologies such as an emergency-release system for the noninvasive interface (1-10 visual analog scale score 9.2 +/- 1.5 vs 6.8 +/- 3.3, P<.001), a humidification system (8.6 +/- 1.4 vs 7.8 +/- 2.6, P=.02), a contactor for providing larger inspiratory volumes (8.4 +/- 1.7 vs 6.0 +/- 3.0, P=.009), a built-in cough assistance mode (9.2 +/- 1.4 vs 5.5 +/- 3.5, P<.001), new options to improve speech, or new MV modes such as a volume-targeted pressure control. CONCLUSIONS: The opinions of patients and prescribers differed about the ideal home ventilator. Patients were less prone to use new technologies, mainly because of a lack of information, underlining the need for regular MV update in patients receiving long-term MV. (C) 2014 Daedalus Enterprises