Assessment of safety and efficacy of volume-targeted ventilation in patients with neuromuscular disease.
Slowly progressive neuromuscular disease
Established on fixed bi-level ventilation
Documented clinical respiratory stability by supervising clinician (no hospitalizations, respiratory infections or change to ventilator settings in preceding 6 weeks)
Rapidly progressive neuromuscular disease
Decompensated respiratory failure (pH < 7.35)
Pregnancy
Aged <18, >80
Single group
Volume-targeted non-invasive ventilation
DeviceA target tidal volume is set on the ventilation device, and the device will then automatically adjust delivered pressures to reach this target tidal volume.
Mean overnight transcutaneous carbon dioxide
Average carbon dioxide level overnight
Maximum overnight transcutaneous carbon dioxide
Maximum carbon dioxide level reached overnight
Overnight desaturation index
The number of desaturation episodes per night during sleep
Visual analogue scale of sleep comfort
Assessment of sleep comfort on each ventilator on 100mm scale. Min score 0mm (worse sleep comfort), Maximum score 100mm (best sleep comfort)
Health-related quality of life
\- Quality of Life Measure for people with slowly progressive and genetic neuromuscular disease questionnaire. Minimum score (worst QoL) 0, Maximum score (best QoL) 100.
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