Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey.
BACKGROUND: The life expectancy of individuals with Duchenne muscular dystrophy has improved considerably with the use of mechanical ventilation to manage respiratory insufficiency. The choice between continuous noninvasive ventilation (NIV) and invasive ventilation is guided both by local logistica...
| Published in: | Respiratory Care Vol. 65; no. 11; pp. 1712 - 1721 |
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| Main Authors: | , , , , , |
| Format: | research tables/charts Journal Article |
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Mary Ann Liebert, Inc.
Nov2020
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=146553854&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 146553854 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 00201324 4GG jtl: Respiratory Care issn: 00201324 maglogo: N pubinfo: dt: Nov2020 vid: 65 iid: 11 pid: 1365 pub: Mary Ann Liebert, Inc. place: New Rochelle, New York artinfo: ui: 146553854 146553854 146553854 10.4187/respcare.07131 146553854 ppf: 1712 ppct: 9 formats: fmt: @attributes: type: P tig: atl: Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey. aug: au: Boussaïd, Ghilas Stalens, Caroline Devaux, Christian Segovia-Kueny, Sandrine Lofaso, Frédéric Reveillere, Christian affil: Direction des Actions Médicales, AFM-Téléthon, Evry, France sug: subj: Respiration, Artificial Muscular Dystrophy, Duchenne Quality of Life Attitude to Life Human Cross Sectional Studies Questionnaires Prospective Studies Gastrostomy Tubes Descriptive Statistics Fisher's Exact Test Data Analysis Software T-Tests Child, Preschool Child Adolescence Adult Male Female Child, Preschool: 2-5 years Child: 6-12 years Adolescent: 13-18 years Adult: 19-44 years Male Female ab: BACKGROUND: The life expectancy of individuals with Duchenne muscular dystrophy has improved considerably with the use of mechanical ventilation to manage respiratory insufficiency. The choice between continuous noninvasive ventilation (NIV) and invasive ventilation is guided both by local logistical considerations and by clinical considerations, but the choice depends largely on patient preference. It is important to know the effects of ventilatory dependence and the method used (ie, continuous NIV or invasive ventilation) on subjects' quality of life. METHODS: This was a cross-sectional prospective survey of 192 subjects with Duchenne muscular dystrophy using mechanical ventilation in France. Subjects were grouped and compared according to dependence on mechanical ventilation and the ventilation methods used. RESULTS: Regardless of the mechanical ventilation method, subjects with gastrostomy tubes reported more frequent emergency consultations for digestive problems (22.5% vs 4.6%, P = .001). Subjects with invasive ventilation reported more insomnia than those with continuous NIV (23.8% vs 8.5%, P = .04). The latter reported more ineffective cough than the invasive ventilation group (72.3% vs 49.2%, P = .02). Overall, the subjects in our sample were satisfied with their medical care, regardless of dependence level or ventilation type. More specifically, 86.1% of subjects with intermittent NIV and 83.6% of ventilator-dependent subjects were satisfied. CONCLUSIONS: Continuous and invasive mechanical ventilation did not affect the perception of quality of life for our subjects with Duchenne muscular dystrophy, apart from more insomnia, which can be explained by the fact that they required frequent repositioning in bed. Different pressure-relief mattresses should be tested and compared to prevent the development of pressure ulcers, which may improve the sleep patterns of these patients. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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