• Frédéric Lofaso, Hélène Prigent, Vincent Tiffreau, Nathalie Menoury, Michel Toussaint, MonnierArmelle FinetAF, Natalie Stremler, Christian Devaux, Karl Leroux, David Orlikowski, Cécile Mauri, Isabelle Pin, Sabrina Sacconi, Cécile Pereira, Jean-Louis Pépin, Brigitte Fauroux, and Association Française Contre les Myopathies research group.
• Physiologie-Explorations Fonctionnelles, et Le Centre d'Investigation Clinique et d'Innovation Technologique Unité Mixte de Recherche 805, Hôpital Raymond Poincaré, Assistance Publique Hôpitaux de Paris, Garches, France.
• Respir Care. 2014 Jan 1; 59 (1): 97-106.

BackgroundTo 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.ObjectivesTo 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.MethodsNeuromuscular 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.ResultsCompleted 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.ConclusionsThe 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.

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