Small Study Says No Harm, Much Benefit Comes with NIV

Noninvasive ventilation clearly helps relieve symptoms in people with ALS, but there’s been some concern that it might hasten the decline of respiratory muscle strength.

Yorke uses a Pulmonetic Systems LTV 1000 laptop ventilator, which fits on the back of her power chair. A Passy-Muir speaking valve allows her to talk, and special software allows her to use her computer.

However, a recent study of 22 people with ALS found that the use of NIV coincided with a slowing of decline in vital capacity, a measure of respiratory muscle function.

The authors of the study, conducted in the United Kingdom and published in the July 22 issue of Neurology, also confirmed earlier reports of an improvement in quality of life and survival with NIV use.

Despite continued decline on physical measures, scores reflecting psychological and emotional well-being and sleep quality showed marked improvement when participants used a bilevel positive airway pressure device (pressure ventilator) with a mask or mouthpiece.

Participants apparently weren’t offered volume ventilators. All subjects were offered tracheostomy ventilation as their disease progressed, but all declined.

The investigators suggest that the best criterion for starting NIV in ALS may be the inability to breathe except while sitting upright or standing, a condition called orthopnea.