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


Journal

Respiratory care
ISSN: 1943-3654
Titre abrégé: Respir Care
Pays: United States
ID NLM: 7510357

Informations de publication

Date de publication:
Nov 2020
Historique:
pubmed: 21 8 2020
medline: 26 2 2021
entrez: 21 8 2020
Statut: ppublish

Résumé

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. 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. Regardless of the mechanical ventilation method, subjects with gastrostomy tubes reported more frequent emergency consultations for digestive problems (22.5% vs 4.6%, 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.

Sections du résumé

BACKGROUND 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 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 RESULTS
Regardless of the mechanical ventilation method, subjects with gastrostomy tubes reported more frequent emergency consultations for digestive problems (22.5% vs 4.6%,
CONCLUSIONS 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.

Identifiants

pubmed: 32817441
pii: respcare.07131
doi: 10.4187/respcare.07131
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

1712-1720

Informations de copyright

Copyright © 2020 by Daedalus Enterprises.

Déclaration de conflit d'intérêts

This work was supported in part by AFM Téléthon. The authors have no disclosed no conflicts of interest.

Auteurs

Ghilas Boussaïd (G)

Direction des Actions Médicales, AFM-Téléthon, Evry, France. boussaid.gh@gmail.com.
Université Paris-Saclay, Versailles, France.

Caroline Stalens (C)

Direction des Actions Médicales, AFM-Téléthon, Evry, France.

Christian Devaux (C)

Direction des Actions Médicales, AFM-Téléthon, Evry, France.

Sandrine Segovia-Kueny (S)

Direction des Actions Médicales, AFM-Téléthon, Evry, France.

Frédéric Lofaso (F)

Direction des Actions Médicales, AFM-Téléthon, Evry, France.
Université Paris-Saclay, Versailles, France.
Service d'Explorations Fonctionnelles Respiratoires, Hôpital Raymond Poincaré, Garches, France.

Christian Reveillere (C)

Direction des Actions Médicales, AFM-Téléthon, Evry, France.
Qualité de vie et santé psychologique, Université de Tours, Tours, France.

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Classifications MeSH