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

Abstract：

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.

journal_name

Respir Care

journal_title

Respiratory care

authors

Lofaso F,Prigent H,Tiffreau V,Menoury N,Toussaint M,Monnier AF,Stremler N,Devaux C,Leroux K,Orlikowski D,Mauri C,Pin I,Sacconi S,Pereira C,Pépin JL,Fauroux B,Association Française Contre les Myopathies research group.

doi

10.4187/respcare.02229

subject

Has Abstract

pub_date

2014-01-01 00:00:00

pages

97-106

issue

eissn

0020-1324

issn

1943-3654

pii

respcare.02229

journal_volume

pub_type

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