1. Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers.
- Author
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Lofaso, Fr‚d‚ric, Prigent, H‚lŠne, Tiffreau, Vincent, Menoury, Nathalie, Toussaint, Michel, Finet Monnier, Armelle, Stremler, Natalie, Devaux, Christian, Leroux, Karl, Orlikowski, David, Mauri, C‚cile, Pin, Isabelle, Sacconi, Sabrina, Pereira, C‚cile, P‚pin, Jean-Louis, and Fauroux, Brigitte
- Subjects
ARTIFICIAL respiration equipment ,CHI-squared test ,COMPARATIVE studies ,FISHER exact test ,NEUROMUSCULAR diseases ,QUESTIONNAIRES ,HEALTH self-care ,U-statistics ,VISUAL analog scale ,PATIENT-centered care ,DATA analysis software ,PATIENTS' attitudes ,PHYSICIANS' attitudes ,DESCRIPTIVE statistics ,DISEASE complications ,EQUIPMENT & supplies - 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. [ABSTRACT FROM AUTHOR]
- Published
- 2014
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