An educational programme for home mechanical ventilation in motor neuron disease

Respiratory failure represents the leading cause of death among people with motor neuron disease (MND). Home mechanical ventilation supports respiratory function, but its management places a significant demand on patients and informal caregivers. The need for consistent support to deal with home mechanical ventilation is recognised. Regardless, specific educational interventions are infrequently reported. Within its multidisciplinary clinical care pathway, the Regional Expert Centre for MND of a Northern Italy university hospital offers patients and their caregivers an educational programme on how to deal with noninvasive ventilation (NIV) and invasive mechanical ventilation (IMV) at home. NIV education is usually performed in an outpatient setting. Pneumologists and nurses train patients and caregivers about ventilator functions, management of respiratory interfaces, inhalation therapy, skin integrity preservation and respiratory deterioration detection, while respiratory therapists train patients and caregivers about the use of an assisted cough device. IMV education is performed at the hospital. Respiratory therapists, supported by nurses, train caregivers about ventilator functions, management of tracheostomy cannula, tracheal suction, inhalation therapy and use of assisted cough devices. Finally, a certification of the skills acquired is released. Future studies should assess the effectiveness of this programme in terms of satisfaction and clinical outcomes.