Long term mechanical ventilation equipment for neuromuscular patients: meeting the expectations of patients and prescribers

Background To maximise the likelihood of successful long term mechanical ventilation (MV) in patients with neuromuscular diseases, ventilators characteristics and settings must be chosen carefully taking into account both medical requisites and the patient’s preference and comfort. The general objectives of the survey were 1) to evaluate patients comfort with, and knowledge about, their long term MV; 2) to compare patients and prescribers opinions and expectations regarding long term MV; 3) to compare the equipment used by the patients with prescribers present opinion. Methods Neuromuscular patients receiving long term MV and home MV prescribers in Belgium and France and MV prescribers 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 years (range 3 to 86 years), ventilated since 11 ± 17 year, and 45 MV prescribers. Hundred sixty three (78%) patients correctly designed their MV mode as a volume or a pressure targeted mode and 86% considered their MV as “efficient”. When an inspiratory trigger was available, 92% of the patients were able to use it but only 72% were satisfied. Prescribers were more prone than patients to use new technologies, such as an emergency system to release a noninvasive interface (visual analogue scale (VAS/10): 9.2±1.5 vs 6.8±3.3, P =0.0001), a humidification system (VAS: 8.6±1.4 vs 7.8±2.6, P =0.02), a contactor for providing larger inspiratory volumes (VAS: 8.4±1.7 vs 6.0±3.0, P =0.009), an in-built cough assistance mode (VAS: 9.2±1.4 vs 5.5±3.3 P =0.00001), new options to improve speech, or new MV modes such as a volume targeted-pressure controlled mode. Conclusions Patient’s and prescriber’s opinion differ about the ideal home ventilator. Patients are less prone to use new technologies, mainly because of a lack of information, underlining the need of regular MV update in patients receiving long term MV.