title: 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.
  
  
  OBJECTIVE
  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.
authors.affiliation: 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.
authors.forename: Frédéric
authors.initials: F
authors.lastname: Lofaso
authors.forename: Hélène
authors.initials: H
authors.lastname: Prigent
authors.forename: Vincent
authors.initials: V
authors.lastname: Tiffreau
authors.forename: Nathalie
authors.initials: N
authors.lastname: Menoury
authors.forename: Michel
authors.initials: M
authors.lastname: Toussaint
authors.forename: Armelle Finet
authors.initials: AF
authors.lastname: Monnier
authors.forename: Natalie
authors.initials: N
authors.lastname: Stremler
authors.forename: Christian
authors.initials: C
authors.lastname: Devaux
authors.forename: Karl
authors.initials: K
authors.lastname: Leroux
authors.forename: David
authors.initials: D
authors.lastname: Orlikowski
authors.forename: Cécile
authors.initials: C
authors.lastname: Mauri
authors.forename: Isabelle
authors.initials: I
authors.lastname: Pin
authors.forename: Sabrina
authors.initials: S
authors.lastname: Sacconi
authors.forename: Cécile
authors.initials: C
authors.lastname: Pereira
authors.forename: Jean-Louis
authors.initials: JL
authors.lastname: Pépin
authors.forename: Brigitte
authors.initials: B
authors.lastname: Fauroux
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D001530:Belgium; D002648:Child; D002675:Child, Preschool; D005260:Female; D005602:France; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services; D006801:Humans; D006813:Humidity; D008297:Male; D008397:Masks; D008875:Middle Aged; D009079:Mucociliary Clearance; D009468:Neuromuscular Diseases / Q000628:therapy*; D063087:Noninvasive Ventilation / Q000295:instrumentation; D010349:Patient Compliance; D017060:Patient Satisfaction; D011795:Surveys and Questionnaires; D013997:Time Factors; D014139:Tracheostomy; D012122:Ventilators, Mechanical; D055815:Young Adult
keywords: home care; masks; mouthpieces; myopathies; patient-centered care; respiratory failure