RT Journal Article
SR Electronic
T1 Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers
JF Respiratory Care
FD American Association for Respiratory Care
SP 97
OP 106
DO 10.4187/respcare.02229
VO 59
IS 1
A1 Frédéric Lofaso
A1 Hélène Prigent
A1 Vincent Tiffreau
A1 Nathalie Menoury
A1 Michel Toussaint
A1 Armelle Finet Monnier
A1 Natalie Stremler
A1 Christian Devaux
A1 Karl Leroux
A1 David Orlikowski
A1 Cécile Mauri
A1 Isabelle Pin
A1 Sabrina Sacconi
A1 Cécile Pereira
A1 Jean-Louis Pépin
A1 Brigitte Fauroux
A1 for the Association Française Contre les Myopathies research group
YR 2014
UL http://rc.rcjournal.com/content/59/1/97.abstract
AB 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.