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Research ArticleOriginal Research

Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey

Ghilas Boussaïd, Caroline Stalens, Christian Devaux, Sandrine Segovia-Kueny, Frédéric Lofaso and Christian Reveillere
Respiratory Care November 2020, 65 (11) 1712-1720; DOI: https://doi.org/10.4187/respcare.07131
Ghilas Boussaïd
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
Université Paris-Saclay, Versailles, France.
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  • For correspondence: [email protected]
Caroline Stalens
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
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Christian Devaux
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
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Sandrine Segovia-Kueny
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
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Frédéric Lofaso
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
Université Paris-Saclay, Versailles, France.
Service d’Explorations Fonctionnelles Respiratoires, Hôpital Raymond Poincaré, Garches, France.
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Christian Reveillere
Direction des Actions Médicales, AFM-Téléthon, Evry, France.
Qualité de vie et santé psychologique, Université de Tours, Tours, France.
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Abstract

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.

  • Duchenne muscular dystrophy
  • continuous noninvasive ventilation
  • invasive ventilation
  • quality of life
  • French cross-sectional survey

Footnotes

  • Correspondence: Ghilas Boussaïd PT PhD, AFM-Téléthon, 1 Rue de l’Internationale, 91000 Évry, France. E-mail: boussaid.gh{at}gmail.com
  • This work was supported in part by AFM Téléthon. The authors have no disclosed no conflicts of interest.

  • Copyright © 2020 by Daedalus Enterprises
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Respiratory Care: 65 (11)
Respiratory Care
Vol. 65, Issue 11
1 Nov 2020
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Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey
Ghilas Boussaïd, Caroline Stalens, Christian Devaux, Sandrine Segovia-Kueny, Frédéric Lofaso, Christian Reveillere
Respiratory Care Nov 2020, 65 (11) 1712-1720; DOI: 10.4187/respcare.07131

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Impact of Mechanical Ventilation Methods on the Life Perception of Subjects With Duchenne Muscular Dystrophy: French Cross-Sectional Survey
Ghilas Boussaïd, Caroline Stalens, Christian Devaux, Sandrine Segovia-Kueny, Frédéric Lofaso, Christian Reveillere
Respiratory Care Nov 2020, 65 (11) 1712-1720; DOI: 10.4187/respcare.07131
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Keywords

  • Duchenne muscular dystrophy
  • continuous noninvasive ventilation
  • invasive ventilation
  • quality of life
  • French cross-sectional survey

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