People with Duchenne muscular dystrophy (DMD) may not need a tracheostomy — the surgical placement of a breathing tube in the neck — to survive when their breathing muscles get too weak, according to a new study published in the American Journal of Physical Medicine & Rehabilitation.
Instead, researchers found that many patients can live well into adulthood using continuous noninvasive breathing support (CNVS), which delivers air through a mouthpiece or mask, and with cough-assist devices that help clear mucus from the lungs.
The study looked at 486 people with DMD treated at centers in the United States and Japan. Of these, 263 patients were able to use CNVS full-time without ever experiencing severe breathing crises or requiring hospitalization. Another group of patients who had already undergone tracheostomies were able to have their tubes removed and successfully transition to CNVS.
While the average survival age of patients with a tracheostomy is 29 years, “DMD patients can live into their 50s using noninvasive ventilatory support,” the researchers said. The study centers had 57 patients over age 40 and 14 patients over age 50 who were CNVS-dependent for 20 to 34 years.
Patients using CNVS had important advantages compared to those with tracheostomies. They experienced fewer lung infections, fewer hospital stays and better quality of life. Many could still talk, eat and in some cases even gain weight once their breathing support was optimized.
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Only three patients in the entire study needed tracheostomies, and this was due to severe lung disease rather than weak breathing muscles alone.
The researchers believe that with the right training, CNVS and cough-assist devices can safely replace tracheostomies for most people with DMD, helping them live longer, healthier and more comfortable lives.
They also point out that avoiding tracheostomies can save families and healthcare systems enormous costs — sometimes more than $500,000 per year for nursing care.
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