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

Respir Care. 2014 Jan;59(1):97-106. doi: 10.4187/respcare.02229. Epub 2013 Jun 13.

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.

Keywords: home care; masks; mouthpieces; myopathies; patient-centered care; respiratory failure.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude of Health Personnel*
  • Belgium
  • Child
  • Child, Preschool
  • Female
  • France
  • Health Knowledge, Attitudes, Practice*
  • Home Care Services*
  • Humans
  • Humidity
  • Male
  • Masks
  • Middle Aged
  • Mucociliary Clearance
  • Neuromuscular Diseases / therapy*
  • Noninvasive Ventilation / instrumentation
  • Patient Compliance
  • Patient Satisfaction
  • Surveys and Questionnaires
  • Time Factors
  • Tracheostomy
  • Ventilators, Mechanical*
  • Young Adult