Research shows that proper respiratory care can extend the life of people with neuromuscular disorders and has a significant impact on their quality of life. Respiratory failure is the number one cause of death among Duchenne Muscular Dystrophy patients, yet today there are preventative measures and interventions that can be beneficial in maintaining and prolonging comfort of life. The costs associated with invasive ventilation are high as many people are unable to live in the community due to mechanical ventilation and are therefore forced to reside in ICU, often unnecessarily. Options of non-invasive ventilation are not well known and understood by both patients and health care providers. Prevention of secondary complex medical conditions is critical in order to prevent long term hospital admissions, loss of independence and or life threatening conditions (McKim et al).
This paper outlines the above issues and concludes with providing recommendations for the important leadership role Muscular Dystrophy Canada can play in addressing priority actions to improve the lives of people with neuromuscular diseases.
Ventilation Support and Information
This site contains resources, tools and information for people using ventilators. The “Take Charge, Not Changes” kit, developed specifically for people with neuromuscular conditions, includes emergency checklist and other documents that can be downloaded and customized to reflect your own needs and situation.
This Center, based at the University Hospital, Newark, New Jersey consists of physicians and other health care professionals dedicated to the care of patients with neuromuscular weakness and respiratory impairment from any cause. Led by Dr. John Bach, the Center provides real hope for patients who are thought to be without any options through conventional management.
The Centre’s Institute for Rehabilitation Research and Development website contains online education modules for ventilation and respiratory care, including protocols for specifically for neuromuscular disorders.
West Park Heath Care Centre provides information and online e-learning modules for individuals and their caregivers about long term ventilation.
The Canadian Thoracic Society’s Clinical Practice Guidelines for home mechanical ventilation contains detailed information regarding home mechanical ventilation for patients with DMD (pages 109-124); other muscular dystrophies and myopathies (pages 125-131);and myotonic dystrophy (pages 132-137). Click here for a copy of the Executive Summary.
Chest Journal. May 2010, Vol 137, No. 5.