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Archivos de Pediatría del Uruguay

versión impresa ISSN 0004-0584versión On-line ISSN 1688-1249

Resumen

PINCHAK, Catalina et al. Update in the respiratory management of patients with neuromuscular diseases. Arch. Pediatr. Urug. [online]. 2018, vol.89, n.1, pp.40-51. ISSN 0004-0584.  http://dx.doi.org/10.31134/ap.89.1.8.

A November 2016 Noninvasive Ventilatory Support workshop and meeting with more than 200 medical professionals, physiotherapists, respiratory therapists and nurses took place in the city of Montevideo, Uruguay. It was conducted by Dr. John Robert Bach, Medical Director of the Center for Non-Invasive Mechanical Ventilation at Rutgers New Jersey School of Medicine in Newark, New Jersey, who is recognized worldwide for his extensive background in studies and publications on noninvasive ventilation and neuromuscular diseases.

Non-invasive respiratory care which combines ventilatory support initially at night and then support continuously 24 hours per day, even in patients with minimal vital capacity combined with the implementation of specifics techniques for assisted coughing and glossopharyngeal breathing have contributed to a better quality of life and survival of patients with neuromuscular diseases.

Technological advances and proper training for patients and caregivers facilitates the patient’s ability to stay at home and also promotes their autonomy and integration, without them having to depend on hospice or permanent nursing care.

It is essential for health care professionals to know all the therapeutic possibilities available for their patients and share with both the patients and the patient’s family, so as the disease progresses it will help everyone clearly understand all options during conscious decision-making.

It is necessary to promote a paradigm shift in the way health professionals approach individuals with neuromuscular diseases. The key recommendations from that meeting are summarized in this article.

Palabras clave : Neuromuscular diseases; Noninvasive ventilation.

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