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...

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Published in:Respiratory Care Vol. 65; no. 11; pp. 1712 - 1721
Main Authors: Boussaïd, Ghilas, Stalens, Caroline, Devaux, Christian, Segovia-Kueny, Sandrine, Lofaso, Frédéric, Reveillere, Christian
Format: research tables/charts Journal Article
Published: Mary Ann Liebert, Inc. Nov2020
Online Access:View this record in EBSCOhost
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      dt: Nov2020
      vid: 65
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      pub: Mary Ann Liebert, Inc.
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        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
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